The final item of business is a members’ business debate on motion S6M-10584, in the name of Willie Coffey, on pancreatic cancer awareness month. The debate will be concluded without any question being put.
Motion debated,
That the Parliament marks Pancreatic Cancer Awareness Month, which takes place in November, and World Pancreatic Cancer Day, which takes place on 16 November 2023; understands that pancreatic cancer is the deadliest common cancer in Scotland and the UK, with more than half of people who are diagnosed dying within three months; further understands that survival rates have barely changed in 50 years; considers that data on the experience of patients with this disease is incredibly scarce and poor, leading to concerns of patients’ voices being lost in the system; believes that support and information for patients with pancreatic cancer is often neither readily available nor forthcoming; applauds the work of the range of pancreatic cancer charities that do provide information and support for patients and their families; notes the view that more needs to be done to ensure that all patients get immediate and easy access to such support as soon as they are diagnosed, given that, it understands, currently only 12% of people diagnosed with pancreatic cancer in Scotland are using such support channels; commends all the charities and activist organisations and their dedicated supporters for their tireless efforts to raise awareness of pancreatic cancer, and wishes everyone involved with Pancreatic Cancer Awareness Month every success in their endeavours.
17:31
I thank all the members who supported the motion to enable us to highlight the issue of pancreatic cancer during the month of November. The Parliament has a good record of doing so, and I acknowledge the efforts of my colleague Clare Adamson, who has been at the forefront of bringing the subject to our attention over many years. Members might recall the moving speech from our former colleague John Scott, who spoke very movingly in 2020 about his illness and recovery. It was one of those moments in the life of the Parliament when we were all grateful for the opportunity to come to this place and share some of the important things in life.
I have no doubt that we will hear from members across the chamber of the experiences of their family or constituents, and I am no different. My mother died from this disease in 1985 and, although that seems almost half a lifetime ago, I can assure members that it is as painful today as it was then. It never gets any easier for me or my sister, Helen, and her family, who remember her and still miss her.
I am grateful, as ever, to the team at Pancreatic Cancer UK—I think that some of those colleagues are in the gallery tonight, and I welcome them—who provided us with some helpful facts and figures about this cancer. If there is one message from the briefing that the team provided, it is this: if we act quickly, we can save more lives.
More than half of the people who get this cancer will not survive more than three months from their diagnosis. About 70 per cent of people will not receive any treatment, only one in four will survive beyond a year and only 12 per cent of people who are diagnosed use the various support channels that are in place.
Alarmingly, most people cannot name the most common symptoms that may—I stress the word “may”—indicate pancreatic cancer. Anyone experiencing one or more of the most common symptoms—back pain, indigestion, tummy pain and weight loss—for more than four weeks should contact their general practitioner. Anyone experiencing jaundice should head straight to an accident and emergency department to have that checked. I stress again that those symptoms are not necessarily indicators of pancreatic cancer, but it helps to know those symptoms and to get checked out as quickly as possible.
Those are all pretty desperate and alarming statistics, but that can change. There is some light at the end of the tunnel. The Scottish Government has specifically committed to improving pancreatic cancer survival rates in its cancer plan. Through the Scottish diagnostic pathway improvement project, the aim is to speed up diagnosis and improve the care that we offer to pancreatic cancer patients in Scotland.
According to Pancreatic Cancer UK, through the pathway, Scotland is leading the way in speeding up diagnosis, which is critical for patients, and the early results are encouraging. As I said at the outset, time is critical, so speeding up all aspects of the patient journey is so important.
The indications from the pilot project are that people are getting multiple tests as soon as possible. So far, about 12 per cent of patients in the pilot health board areas are getting that all-important early diagnosis that can save their lives. The pilot is funded for only two years. Clearly, if it is helping, I am certain that the Government will consider extending that work. I hope that the minister will say something about that later.
Pancreatic Cancer UK’s “Don’t Write Me Off” campaign focuses on the urgent need for faster and concurrent diagnostic pathways. The need for that was all too evident in the case study, which was painful to read, about the lady from Fife who, tragically, did not get any treatment due to delays and repeated tests.
Research and innovation have a key role to play, and Scotland is leading the way. Pancreatic Cancer UK has invested more than £500,000 to support research and a variety of awards, particularly the future leaders academy at the Beatson Institute for Cancer Research, which provides five early-career scientists with training and mentorship to help them on their journey to becoming pancreatic cancer specialists. All five students managed to complete their PhDs, even during Covid, and their work is beginning to leverage in other funding for their research labs.
Pioneering research is also taking place that could lead to a new groundbreaking immunotherapy treatment for the cancer. The good work that is being done by Precision Panc in Glasgow is on-going and focuses on matching up molecular profiles of patients with the most effective clinical trials that are available. I am sure that we offer our full support to everyone who is working in that important area of research.
I see the opportunity of this debate as one of the most important contributions that we can make, as members of this Parliament. It is about highlighting an extremely dangerous and life-threatening cancer that, even as we speak, the public do not know much about. Our job is to bring it to the attention of our constituents and to inform them of the risks while offering some reassurance about the great work that is being undertaken to try to improve the situation.
Everyone in Scotland must be able to access the services that are giving us so much hope through the pilots and the research. If we can save time, we will save lives.
I look forward to hearing the contributions of other members during the rest of the debate.
17:37
I thank Willie Coffey for securing the debate and for picking up the baton for this year’s debate in the Scottish Parliament. I reassure the sea of purple in the gallery that, although I might not be holding the baton, I am still running the race with them and everyone who is in the fight to raise awareness of pancreatic cancer and to find the much-needed advances in relation to the disease.
I also thank Willie Coffey for mentioning John Scott and the powerful speech that he made about his wife and his own situation. I hope that his colleagues will take our best wishes back to him.
It is important to increase public awareness. As always, I will reiterate some of the symptoms to look out for. As Mr Coffey said, many people cannot name a single symptom of pancreatic cancer, but those symptoms are often commensurate with the symptoms of other conditions. Common symptoms include back pain, indigestion, tummy pain, unexplained weight loss and loss of appetite. Anyone with jaundice should immediately go to an accident and emergency department. Increasing public awareness of the symptoms is vital, as early diagnosis and intervention are the best way to treat and survive the cancer.
I am pleased to say that marking pancreatic cancer awareness month is now a firm annual fixture in the Scottish Parliament. That in itself is a mark of the progress in bolstering pancreatic cancer in Scotland’s policy agenda. Pancreatic cancer campaigners, many of whom are in the gallery, and many of whom have become friends, are a pleasure to work with. It is their advocacy, as well as the bravery of those with lived experience of the disease, that has brought this debate to the chamber for its sixth year.
I was delighted to host Pancreatic Cancer UK in the Parliament earlier this month. A cross-party contingent of MSPs came and took part in a photo call on the garden lobby steps as part of PCUK’s “Don’t Write Me Off” campaign. Campaigners were able to speak to MSPs about their experiences in the drop-in session.
I had some difficult but heartening conversations with the campaigners who came along. Nicole McDonald spoke about her dear friend Danielle, who sadly lost her life to pancreatic cancer in June. Nicole and Danielle’s mother, Diane, spoke with such passion and warmth about that really young woman, whose resilience was evident in their thoughts. Danielle’s wry humour following her diagnosis might have been a point of occasional frustration to her mother and Nicole, but it was a wonderful mark of her character in the face of such tribulation. I never had an opportunity to meet her but, from speaking to Nicole and Diane, it was clear that, throughout her illness, Danielle remained indelibly herself. I was utterly touched that Nicole gave me the pin that I am wearing this evening, and I will wear it proudly every November in memory of Danielle. I thank her once again for coming to speak to us about her.
I have spoken previously about a cause for optimism—a quality that is hard to come by when we are talking about pancreatic cancer. The central causes for optimism are that, with early intervention, pancreatic cancer can be survived, and that there are innovations in treatment across Scotland. I have spoken previously about the exemplary work of Precision Panc in Glasgow. NHS Scotland has launched a new initiative with the innovative virtual cancer care team to speed up diagnosis and treatment for people with two of the deadliest forms of cancer, of which pancreatic cancer is one. A Scotland-wide two-year project, which was included in the recently published cancer action plan for Scotland, will triage patients who have been referred by local healthcare teams because of a suspicion of pancreatic cancer. That should allow for swift diagnosis and reduce delays.
Other promising developments include a clinical study to develop a breath test that could detect pancreatic cancer. A team at Imperial College London, led by Professor George Hanna, is studying how breath samples taken in GP surgeries could be used to ensure that, for people with early pancreatic cancer symptoms, which can be mistaken for other things, the condition could be ruled out at an early stage if the test becomes available.
As Pancreatic Cancer UK puts it, we need to go faster. As I have said many times when I have spoken about the disease, weeks, months and years for other cancers are seconds, minutes and hours for pancreatic cancer, because it can be so aggressive and the time that people have to deal with it and live with it after diagnosis can be so short. We have to pivot so that we get there earlier and, as Lynda Murray always says, give people a chance.
17:43
I thank Willie Coffey for securing the debate and welcome the people who have joined us in the public gallery. I also pay tribute to Clare Adamson, who has committed to bringing the debate to the chamber in all the time that I have been in Parliament. I thank her for the opportunity in the past, because the debate has become an important point for us as a Parliament to come together and consider the issues.
Many members who are in the chamber will have personal knowledge of someone who has suffered from pancreatic cancer, whether a family member, friend, colleague or constituent. I am always moved by people who contact us beyond the debates.
I thank colleagues for mentioning John Scott and the speech that he made about his personal experience in one of the debates. I saw him at the Royal Highland Show this year, and he is doing well. He always emails us to keep us on our toes in Parliament. It is always good to see and hear from John. I thank colleagues for their comments.
As Willie Coffey outlined, the real cruelty of pancreatic cancer is that it is especially hard to detect. That, allied with the lack of timely treatment and care, means that the chance of best quality of life is significantly lowered for many people who discover that they have it, which often happens in A and E.
Just under 900 people a year are diagnosed with pancreatic cancer in Scotland, and pancreatic cancer survival has not shown any real improvement over the past 50 years. In Scotland, pancreatic cancer is the deadliest common cancer, with more than half of people who are diagnosed dying within the first three months, and seven out of 10 people receiving no treatment.
In our debate on the subject last year, I raised a number of issues on decisions to treat and the call for long-term funding to embed the learnings of the Scottish diagnostic pathway improvement project in our NHS. It is good to see some of the work that is happening around that. I was pleased to attend, with others, the Pancreatic Cancer UK drop-in that was held in Parliament recently, and to speak to a number of patients and family members about the issues that they wanted to raise and the changes that they want to see.
Pancreatic Cancer UK has worked with experts across the field to develop the faster, fairer and funded optimal care pathway, which will inform how best to diagnose, treat and care for pancreatic cancer patients. However, we still need far more work to be taken forward on decision making around decision to treat, and cancer workforce planning is critical to that. Funding for specialist pancreatic cancer roles in every health board across Scotland and the delivery of the workforce plan in the Scottish Government’s cancer plan need to be the top priorities if we are to achieve what we want to see. I very much welcome the fact that the Scottish Government has committed to improving pancreatic cancer survival, but we now need to see what that will look like in reality within the plan. That will require action and not just words if we are to ensure that improvements become a reality.
It is hoped that, through implementation of the optimal care pathway, significant progress can be made to improve treatment for people, with—importantly—more decisions to treat being made. However, if this work is to progress significantly, we need to see something that is an opportunity for Scotland—the doubling of treatment pathways and improvement in survival rates. That could see around 400 more people in Scotland living longer and better lives over the next five years.
Although we have to be honest—this is always an honest debate—that the current statistics paint a challenging picture, we know that early diagnosis and treatment can improve the lives of people with pancreatic cancer. Scotland has an opportunity to lead the way in the United Kingdom in improving treatment of pancreatic cancer and survival rates. I believe that, with focus and determination, we can help to move Scotland and the UK from being one of the worst-performing countries to being one of the best.
Every member in the chamber has a duty to their family, their friends and their constituents to hold the Government to account on this and ensure that we stand by the commitments that we have made to try to improve the survival rates. As others have said, time is a luxury that those who are suffering from pancreatic cancer do not have, so we must act now and make that a priority.
I have spoken in every debate that we have had on the subject since I was elected, because I know that we can make a difference. Every campaigner I have met, every individual I have worked with and every family that has lost a loved one to pancreatic cancer has demanded that we do better. As Clare Adamson said, when we meet campaigners, it is an odd feeling, because we come away with hope even though they have had such a negative time. They may know that our work is not going to make a difference for their loved one, but they are demanding that we make a change for other people’s families and loved ones.
I hope that today’s debate shows that we always have all those people in mind and that we want to continue to work to improve treatment and pathways, and above all to celebrate the lives of people we have lost to pancreatic cancer. They are all individuals we need to celebrate, and I hope that today’s debate gives us the opportunity to do that.
17:48
I, too, thank Willie Coffey for bringing this debate to the chamber. On behalf of Scottish Labour, I welcome the recognition of pancreatic cancer awareness month and world pancreatic cancer day, which will be marked tomorrow. It is critical that we take time to mark those events and I wish everyone who is involved all the best for the work that will be carried out tomorrow and in the rest of the month.
As other members have said, raising awareness of illnesses such as pancreatic cancer is pivotal to ensuring early diagnosis and improving the prognosis. Like Miles Briggs, I have spoken in our previous debates on the subject since I was elected, and I always consider it important to highlight the key symptoms.
We know that the problem is that people do not recognise the key symptoms of pancreatic cancer. Those include abdominal or back pain or discomfort, unexplained weight loss or loss of appetite, yellowing of the skin or eyes or itchy skin, a change in bowel habits, nausea or vomiting, and indigestion that does not respond to treatment. Knowing those symptoms and seeking medical advice, even as a precaution, can be life saving or life prolonging, and it is key that we continue to support the public awareness campaigns on that, as all members have said. According to Pancreatic Cancer UK, only 8 per cent of people can name the most common symptoms of pancreatic cancer, which is far too low. We know that, so, to save and prolong lives, we must increase the numbers significantly.
I thank the various organisations that contacted me ahead of today’s debate, along with the members of the public whose family members have been affected who also contacted me. Such briefings are always important and highlight the sheer scale of the challenge that we face given the destructive nature of pancreatic cancer. We always appreciate the work that has gone into putting together such briefings for us.
Other members have mentioned the importance of research. We know from research that pancreatic cancer is the deadliest common cancer. More than half of people die within three months of diagnosis, and seven in 10 people with pancreatic cancer never receive any treatment, often because of late diagnosis. This is a significant challenge that demands immediate response, as others have said. That is why I give my full support to Pancreatic Cancer UK’s “Don’t write me off” campaign, which sets out three priorities, which are to make diagnosis, treatment and care faster, fairer and funded. As I noted, many pancreatic cancer sufferers will not receive treatment, so we need that diagnosis and treatment to be much faster.
As I often do in the chamber, I will talk a little about inequalities that exist among people seeking support and treatment. The socioeconomic health inequalities that create deep, divisive and damaging inequalities in our communities also matter in these circumstances. We need to support people to speak to their general practitioner or a local nurse whenever they can. Even if that is just a precaution, it is always worth it.
As has been said, we need to address funding to provide support for patients. The motion talks about the fact that we need funding for services. The national health service is struggling at times, particularly with long waiting times, slow diagnosis and a lack of readily available treatment. We must address that and look at the funding sources. As I think everybody would agree, the NHS is our proudest possession—it is certainly my party’s proudest creation. We would be letting people down if we were not honest about the things that we need to do.
I thank everyone in the public gallery and all the members who have spoken.
17:53
I thank Willie Coffey for bringing this important debate to the chamber. I also thank the organisations that provided briefings to parliamentarians for today’s debate, including Pancreatic Cancer UK and Pancreatic Cancer Action Scotland. As well as thanking them for the briefings, I thank them for the great work that they do. I note the timeliness of the debate, as it comes in the middle of pancreatic cancer awareness month, with world pancreatic cancer day tomorrow.
As others have alluded to, pancreatic cancer is the deadliest common cancer, with more than half of people dying within three months of diagnosis, many of whom never receive treatment. The statistics are stark. Scotland has one of the worst five-year survival rates in the world, ranking 32 of 33 countries with comparable data. However, there is hope for the future and for early diagnosis, which would save lives. Pancreatic Cancer UK’s “Don’t write me off” campaign is calling for a faster, fairer and funded pathway through diagnosis, treatment and care. It is estimated that an optimal care pathway could double treatment and survival rates. If it was introduced today, it would result in over 400 more people with pancreatic cancer in Scotland living longer and better lives over the next five years.
The pathway for patients from my constituency is shared between NHS Shetland and NHS Grampian but, as in other areas, too often, by the time of a diagnosis there is little time left for the patient.
Pancreatic Cancer Action Scotland highlighted in its briefing from its “Share your story” campaign that patients will visit their GP an average of four times before being diagnosed, and that 43 per cent of all pancreatic cancer cases are diagnosed by emergency presentation.
As Willie Coffey said, we all have stories to tell of family, constituents or loved ones, and I have permission from the family that I will talk about to mention their loved ones.
Shetland is an island community, and we like to think that we all know each other, which is true up to a point. In times of loss and deep sadness, we come together to support each other. In the summer of 2019, I attended the funeral of a friend, Alexis. The hall where the service was held was packed. The community was in shock and came to pay respects and offer sympathy to the family for the loss of someone who was held dear and taken from us too young. Pancreatic cancer had claimed another person.
Time moved on and, led by Alexis’s husband, Bobby, the family did a 26-mile charity fundraising walk for pancreatic cancer.
In spring of this year, we gathered again in the same place for another funeral. This time, it was for Bobby. Almost unbelievably, pancreatic cancer had cruelly visited this family again. Their children and extended family were dignified throughout, but the pain, grief and heartache etched on the faces of those who loved Bobby and Alexis most was plain for all to see. The loss of Alexis and Bobby has been felt keenly by their work colleagues, too. Alexis worked in a local solicitors practice, and Bobby was a successful businessman in the house building sector. The ripples of this devastating disease extend out far into the wider community, and Alexis and Bobby are deeply missed by so many.
As the motion highlights, survival rates for pancreatic cancer have barely changed in 50 years. We need to change that. More needs to be done to help us reverse the stark numbers. More research and early diagnosis are the main things being called for, and I am sure that all of us in the chamber support those calls. We need to move faster. We cannot have another lost 50 years.
17:57
I thank Willie Coffey for securing this debate, and for sharing his personal story, and I pay tribute to Clare Adamson for her work.
I also thank the organisations that are involved in the support of those with pancreatic cancer, including Pancreatic Cancer UK, which has provided tireless and invaluable support to those with cancer and is the UK’s leading funding specialist into pancreatic cancer research. It is driving innovative research to find breakthroughs that will change how we understand, diagnose and treat pancreatic cancer. As Beatrice Wishart has said, Pancreatic Cancer Action also does great work in raising awareness of symptoms and the stories of those with direct experience of pancreatic cancer.
Although the survival rates have improved enormously for most cancers, that is sadly not the case for pancreatic cancer. Currently, more than half of people diagnosed with pancreatic cancer die within three months. Early detection and awareness of symptoms are essential in identifying most cancers early, but with pancreatic cancer, that is difficult due to the generally vague symptoms that it presents. Symptoms of mild back pain, indigestion, tummy pain and nausea symptoms that sound like stomach upset are often dismissed.
When I met a constituent at a parliamentary reception earlier this session, I was given a card with a short version of their family’s story. It has stayed on the pin board in my office ever since. I want to share that card—and their words—today, because it so clearly demonstrates how difficult and devastating this cancer can be. It says:
“Until 2013, we knew nothing about pancreatic cancer. In December 2012, our daughter, who turned 25 that month, had extreme vomiting which was initially thought to be norovirus. Due to her getting no better and losing weight rapidly, she saw a GP on the 7th of January 2013. Due to extremely high bilirubin levels, she was immediately admitted to hospital where she had a number of tests carried out.
On 18 January 2013, our world fell apart when our daughter was diagnosed with stage 4 inoperable pancreatic cancer. She had a four-year-old daughter at the time, and they both moved in with us to enable us to care for our daughter and granddaughter. She deteriorated rapidly, and on 2 June 2013 she passed away, leaving a heartbroken family. No parents, child, brother and grandparents should have to go through this."
As we have heard from many others in the debate, early detection saves lives. Currently, three in five people with pancreatic cancer are diagnosed with inoperable cancer, and the vague symptoms mean that it is difficult for GPs to identify those who need urgent referral for further investigation. We need new tools to help GPs to identify pancreatic cancer at an earlier stage. As has been mentioned, technology such as the breath test, which is being developed in tandem by Pancreatic Cancer UK and Imperial College London, looks very promising. Such innovations will be essential in addressing the inequalities that are currently experienced in the treatment of pancreatic cancer.
The new Scottish diagnostic pathway improvement project is an initiative that has been set up to improve care and speed up the diagnosis time for pancreatic and hepatocellular carcinoma. The pathway is demonstrating positive results, with the time that it takes for scan results to come back to the referring clinician being reduced to just two days from an average of around eight. That allows treatment and support to start more quickly and for support to be put in place to prevent people from quickly deteriorating.
Due to the current late diagnosis of pancreatic cancer, we need to do everything that we can to improve survivability for those who develop the disease. Beyond that, we need to ensure that those whose cancer is not survivable have all the support that they require. The early experience that I shared of a constituent of mine shows that this is more than just a health issue; we need to ensure that when people have very little time left, they can get access to the support that they need to make the most of the time that they have left with their families, and that their families have the support that they need after their loved ones have passed away.
Work to ensure that the public know the symptoms, that those who suspect that they have pancreatic cancer get easy and quick testing and that those who are diagnosed get the quick treatment that they require needs to be prioritised to ensure that, as Willie Coffey has said, we save time and save lives.
18:02
I am grateful to my colleague Willie Coffey for securing this important debate on pancreatic cancer awareness month. The issue is, I know, close to his heart, as he lost his mother to this horrific disease.
Since being elected in 2021, I have spoken in two previous debates on pancreatic cancer awareness month, which were brought to the chamber by my colleague Clare Adamson MSP. It is an issue that I will always feel is incredibly important to talk about; we are fortunate to have this platform as elected members, so we must use it to raise awareness and fight for better survival rates.
This horrible disease has, sadly, taken too many of my constituents, and I will pay tribute to them later in my speech. Pancreatic awareness month is so important, and I take this opportunity to thank all the charities that do so much to raise awareness throughout the month and, indeed, all year round.
Pancreatic cancer deserves much more attention than the one month of the year that it is given. It is one of the deadliest of all common cancers, with a five-year survival rate of 7.3 per cent; there are more than 900 new pancreatic cancer cases in Scotland and 10,500 in the UK each year; and unfortunately, only 10 per cent of patients are diagnosed in time for life-saving surgery. According to Pancreatic Cancer Action Scotland, patients will visit their GPs an average of four times before being diagnosed. That is really worrying. As we know, early detection saves lives, and GPs play such an important role in that respect.
If the cancer is not detected and left to spread, it can often be too late for any form of treatment. That is why we need to do more—not just this month, but every month—to increase awareness of the symptoms among the public and GPs. Some of the signs and symptoms that might indicate pancreatic cancer have already been mentioned, but they include jaundice, upper abdominal pain or discomfort, mid-back pain, pale and foul smelling stools, loss of appetite, indigestion, nausea and vomiting, a new onset of diabetes, fatigue, changes in bowel habits and unexplained weight loss without trying. Improving awareness of the symptoms can and will save lives.
The issue is incredibly upsetting, and looking at the figures can be a very bleak experience, but it is also important that we highlight the positive news, because we must have hope. After all, if we do not have hope, what have we got? It is therefore inspiring to hear that Pancreatic Cancer UK has, this year, funded a new clinical study to develop a breath test that could detect pancreatic cancer early enough to save thousands of lives every year. The research, which is being conducted by a team at Imperial College London led by Professor George Hanna, involves studying people with early pancreatic cancer symptoms, which are often mistaken for other less serious health conditions, and what happens if they are rapidly referred for scans and life-saving treatment.
If the study is successful, it could make the biggest difference to pancreatic cancer survival rates in 50 years. It would give GPs, who are the first port of call for many health concerns, the tools to make such a difference. It would be a breakthrough, so I hope that the team are really successful, and I wish them well.
I pay tribute to my constituents who have lost their lives, because of pancreatic cancer. Helen, Donald, Billy and Christine will be forever missed but never forgotten. Their memory lives on, and their families are resolute in their determination to find a cure for the disease. In their memory, I will continue to do everything that I can to raise awareness of this terrible disease and to fight for more research in order to increase survival rates. We can and must do more.
18:06
I thank Willie Coffey for securing this members’ business debate. I will not rehearse the statistics that we have already heard, but as we know, early detection is crucial. It is not acceptable that nearly half of all pancreatic cancer cases are diagnosed only in an emergency situation. Sadly, at that stage, the cancer has often spread and it is too late for any curative treatment, which is why raising awareness is so important.
Two of my friends died of this horrible cancer—Peter Murray Usher and Mark Caygill. Mark was told of his diagnosis in March 2020. I sometimes look over the WhatsApp messages and photographs that we shared during that difficult time; I have not deleted them—not that I need to be reminded of his mischievous banter, as his memory will always remain clear in my mind. His WhatsApp response to my initial reaction to his telling me about his diagnosis was:
“Yes it’s a bit of a bummer, but not giving up yet ... Dumfries Hospital, they just told me over the phone that there was nothing to be done”.
Shortly afterwards, Mark made the decision to undergo treatment in Spain. Many of us will not remember the date as significant, but on 14 March Mark was sitting in an aircraft on the runway in Manchester for three hours before it turned round and returned to the gate. The Covid lockdown had struck; the country was in lockdown, so Mark was not going anywhere. It was an awful situation for him, and his family’s hopes were dashed.
Mark died in August, six months after being diagnosed. He was the same age as me. Dozens of his friends and family lined the route from his home farm to his final resting place, but Covid restrictions prevented us from comforting his wife and family. He is missed dearly by his many friends every day.
I do not have all the facts surrounding Mark’s experience, but I know that it was far from ideal. We know that, with earlier diagnosis, people can survive pancreatic cancer, and we also know that pancreatic cancer comes with huge emotional costs for the patient and their family and friends.
Pancreatic Cancer UK has provided an extensive briefing on the facts and figures relating to the disease. However, given that I knew that I would be the final speaker in the open debate tonight, I thought that many of the stats would already have been mentioned, so I thought that I would raise awareness of some of the remarkable people who have taken on this terrible cancer head on.
One case on the Pancreatic Cancer UK website involves a father of two, Stefan, who, in 2021, at the age of 52, found out that he had advanced pancreatic cancer that had spread to his liver and lymph nodes. He had undergone a CT scan after suffering abdominal pain. Believing it to be an ulcer or a hernia, he was given the shock news by the on-duty oncology doctor that he, in fact, had stage 4 pancreatic cancer, which was inoperable and incurable, and that he would be placed in palliative care.
He had no idea what that was, so he asked. The reality dawned when he was told he had perhaps five to six months to live. Telling his wife and children was incredibly difficult and emotional, and Stefan says that it is something that he hopes no one has to go through. He began chemotherapy in February 2022 but, after six months, the chemo was making him more ill than the cancer was. He suffered with severe fatigue that made walking difficult, which prompted him to stop the chemo treatment. Anxiety was brought on by worrying over his finances and how his family would manage when he died, and he suffered a mini breakdown. He did not sleep, he became very inward and he would physically shake and flinch.
Stefan says:
“Life has changed so much, but I think more so for my wife. Helen is always there, always making sure I do what I’m supposed to, but she is always there for the children too. Her attitude and conviction to us all as a family is so inspiring and motivating, it keeps me going.”
Bravely, he says that the family
“take every day as a bonus and try to enjoy it the best we can.”
Remarkably, while all of that has been going on, Stefan has started a fundraising campaign to help to improve facilities at his local hospital. Fifteen months on from his diagnosis, he is still here but is having to live each day as it comes.
I think that we will all agree that Stefan deserves enormous credit for sharing the story of his brave fight against pancreatic cancer. He and the many others who share their stories on the Pancreatic Cancer UK website should be commended for their brave efforts to raise awareness.
Pancreatic Cancer UK has recently launched its “Don’t Write Me Off” campaign, which calls for a faster, fairer, funded pathway for people with pancreatic cancer through their diagnosis, treatment and care. Implementing an optimal care pathway could make a major difference to the lives of people affected by pancreatic cancer; it could double treatment and survival rates and, if introduced today, would result in around 400 more people with pancreatic cancer in Scotland living longer and better lives over the next five years. I should say that Scotland is leading the way in pancreatic cancer innovation, with Pancreatic Cancer UK currently investing £520,554 in Scottish pancreatic cancer research.
Mark did not want to be written off. Stefan does not want to be written off, either. We should make sure that the Government does not write them off. More needs to be done, and done quickly, and we all need to play our part in making that happen.
I call Jenni Minto to respond to the debate.
18:12
I thank my colleague Willie Coffey for bringing the motion to the chamber and reminding us of the impact that pancreatic cancer can potentially have on all of us. In addition, I welcome all the work that is done by Pancreatic Cancer UK, Pancreatic Cancer Scotland and all the other charities that support those with pancreatic cancer, and I welcome them to the Parliament.
I thank all my colleagues for giving such valuable speeches. I am always very taken and moved by the experiences that we can share in the chamber, and Marie McNair is absolutely correct when she says that we are fortunate to have this platform. The stories that Finlay Carson, Beatrice Wishart and Gillian Mackay shared are incredibly powerful and go a long way in raising the profile and awareness of pancreatic cancer in Scotland and further afield.
I also thank my colleague Clare Adamson, because it was through her that I learned more about pancreatic cancer. I commend the work that she has done in the Parliament on putting the person into the numbers, which is incredibly important.
As I was preparing for the debate, I received an email from one of my constituents—Miles Briggs talked about something similar, and I agree with what he said about the challenging picture. The email said:
“It is a cruel, hard-hitting disease with devastating effects. I hope that this debate will fuel the awareness that is so desperately needed for the world’s toughest cancer. Earlier diagnosis is key for this disease, and I hope that change is about to come to a cancer that has had no improvement in 50 years.”
That highlights again, as has been said by a number of members, that families of people who have experienced pancreatic cancer remain involved in the campaign because of that hope for change. As Finlay Carson highlighted, we know the dreadful impact that a diagnosis of pancreatic cancer can have on the person who faces the disease and on their family.
We cannot stress enough the importance of person-centred care in ensuring that all patients get access to support throughout their cancer journey and that their voices and needs are heard. The Scottish Government continues to support the single point of contact programme in 12 sites across Scotland. The programme sets out to make sure that, throughout their cancer pathway, all patients have a constant point of contact to continually refer back to, rather than needing to make new contacts as they go through their testing, treatment and post-treatment support. A single point of contact will ensure that patients receive timely and accurate advice on their appointments, tests and results. Those people will also offer to discuss non-clinical support that is available and link them with other organisations that can provide the support that is needed.
As we know, November is pancreatic cancer awareness month. To recognise that, we will, again, light up in purple St Andrew’s house and Victoria Quay on world pancreatic cancer day. Raising awareness of pancreatic cancer and its common symptoms is crucial in detecting this devastating cancer early, so I thank members for emphasising the symptoms.
We know that the earlier cancer is detected, the easier it is to treat, so we continue to invest in our detect cancer earlier programme, which takes a whole-systems approach to early detection by covering primary care, secondary care, public awareness, data and screening.
I hope that most—if not all—members have seen our “Be the Early Bird” awareness campaign this year. The campaign aims to reduce the fear of cancer and empower and encourage people with possible symptoms to act as early as possible.
By continuing to invest in cancer diagnostics and waiting times, we are striving to detect cancer earlier and faster. We are optimising diagnostic pathways and activating additional rapid cancer diagnostic services. I encourage anyone with unusual or persistent symptoms to contact their GP as soon as possible.
The Scottish Government published our ambitious new cancer strategy in June this year. Over the next 10 years, our strategic aim is to improve cancer survival rates and provide excellent, equitable and accessible care for all people who face cancer. The strategy takes a comprehensive approach to improving patient cancer pathways, from prevention and diagnosis right through to treatment and post-treatment care, and we continue to focus on improving the outcomes of the less survivable cancers, including pancreatic cancer. We have established the national oncology transformation programme to review and optimise our service models to make that happen, and that work includes workforce and training requirements. Our workforce is central to delivering the outcomes of the strategy and plan.
As Willie Coffey said, we are determined to improve cancer survival rates, and we have provided more than £650,000 to the Scottish HepatoPancreatoBiliary Network to develop a pathway improvement pilot project for liver and pancreatic cancers, which is now live across all health boards. We look forward to the results of that pilot in improving patient experiences, and a full evaluation of the project’s achievements against its aims will be completed to inform decisions about future funding.
In closing, I make clear the Scottish Government’s enduring commitment to improving pancreatic cancer awareness. In doing so, we can improve early diagnosis rates, patient experience and overall outcomes.
I spoke in this debate two years ago, and I will finish with the same words today that I said then. They are the simple and honest words from a family who lost a loved one to pancreatic cancer, and they ring true for any illness but even more so for pancreatic cancer:
“Keep listening to your body”.
It is crucial that we continue to raise awareness of cancer symptoms, particularly those of less survivable cancers such as pancreatic cancer. I give my grateful thanks to all the people who are helping to do so.
Thank you, minister. That concludes the debate.
Meeting closed at 18:19.Air ais
Decision Time