Meeting of the Parliament (Hybrid)
Meeting date: Wednesday, November 17, 2021
Agenda: Portfolio Question Time, Circular Economy, Road Infrastructure, Medical Students (Funded Places), Business Motions, Decision Time, Pancreatic Cancer Awareness Month 2021
- Portfolio Question Time
- Circular Economy
- Road Infrastructure
- Medical Students (Funded Places)
- Business Motions
- Decision Time
- Pancreatic Cancer Awareness Month 2021
Pancreatic Cancer Awareness Month 2021
The final item of business is a members’ business debate on motion S5M-01259, in the name of Clare Adamson, on pancreatic cancer awareness month 2021. The debate will conclude without any question being put.
That the Parliament acknowledges that November is Pancreatic Cancer Awareness Month, and that 18 November 2021 is World Pancreatic Cancer Day; understands that pancreatic cancer is one of the most aggressive and least survivable forms of cancer, with more than half of people diagnosed with it dying within three months; further understands that pancreatic cancer can affect anyone, but that it is subject to multiple inequalities with poorer outcomes for certain communities and those living in more deprived areas; understands that survival rates have remained almost static for the last 50 years; highlights the importance of early diagnosis and intervention; notes the view that raising public awareness of key symptoms of pancreatic cancer is vital to that aim; understands that key symptoms of pancreatic cancer include abdominal or back pain or discomfort, unexplained weight loss or a loss of appetite, yellowing of the skin or eyes and/or itchy skin, a change in bowel habits, nausea or vomiting, and indigestion that does not respond to treatment; commends all of 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.18:07
I promise not to sing tonight, Presiding Officer.
I pay tribute to the limitless dedication of the volunteers and campaigners who make pancreatic cancer awareness month happen. We are missing the sea of purple in the public gallery, but I know that they are with us tonight. The first time that we had a debate on pancreatic cancer awareness month in the Parliament was in 2017. As I pause to reflect on what has changed, I note that we will have more speakers from my party than we had in the whole debate in 2017. That is testament to the efforts of everyone who works to get pancreatic cancer in the political spotlight. I thank every one of my colleagues around the chamber who will take part in the debate and look forward to their speeches.
I will talk about optimism. We do not normally associate that with pancreatic cancer. First, I will outline some of the key statistics that show the need for action. Pancreatic cancer is the least-survivable common cancer in Scotland. Only one person in four who is diagnosed with it survives beyond a year. The five-year survival rate is only 5.6 per cent. Members should compare that to the five-year rate of 69 per cent for other common types of cancer. Seven people in 10 with pancreatic cancer will never receive any treatment but will move straight to palliative care and only one person in 10 will receive surgery.
Each November, we emphasise the importance of early diagnosis and intervention. However, recent surveys show that 55 per cent of people in Scotland know almost nothing about the disease and 73 per cent cannot name a single symptom. Let us work to correct that. Symptoms to look for are: abdominal pain that can spread to the back, unexplained weight loss and loss of appetite, new diabetes without weight gain, a yellowing of the skin or eyes, itchiness and a change in bowel habits, including indigestion that does not respond to treatment, smelly pee or floating stools.
Figures on pancreatic cancer have remained static for 50 years. I have said that in every debate that we have had since 2017 but do we really take on board what it means?
I was recently reading about “Succession” star and national treasure Brian Cox, whom I met in the Parliament at an event. In his autobiography, he talks about being pushed into acting largely because of the trauma that he felt after his father Charlie passed away from pancreatic cancer just three weeks after his diagnosis. I ask members to think of the span of Brian Cox’s life, career and body of work. His experience, devastating as it was, is redolent of that of the many patients and families who experience a diagnosis of pancreatic cancer, including those who have shared it with me. Today, in Scotland, more than 50 years after Brian Cox’s family experienced that, another family could hear the same devastating news and face losing a loved one within a matter of weeks. That is why we are all in the chamber tonight.
What about the case for optimism? Where can we look for a change? We must remember that, with early diagnosis, pancreatic cancer can be survived. For patients who are diagnosed in time to receive potentially life-saving surgery, the five-year survival rate increases to around 30 per cent. Early diagnosis, intervention and holistic care can mean that people are able to live longer and enjoy a better quality of life.
Initiatives throughout Scotland are working to raise awareness of the disease. In the summer, I was pleased to take part in the big step forward, which was organised by Pancreatic Cancer UK. I had a walk around Strathclyde park, accompanied by Kim Rowan, who is a formidable campaigner on the matter, Dawn from Pancreatic Cancer UK, my assistant Julia Stachurska and Mullach the dog. If you want to raise awareness of an issue, you can wear all the T-shirts that you want in the world but, if you take a dog on a walk, you get people asking what is happening. Thousands of people took part in the big step forward, and an amazing £240,786 was raised for world-leading research into pancreatic cancer.
I also attended the fabulous production of “Islets of Silence (The C Word)”, a play written and directed by Isobel Barrett. It was heart-warming and difficult but laced with purpose and hope. Most importantly, with the help of Pancreatic Cancer Action Scotland, the play is taking awareness right into our local communities.
Pancreatic Cancer Action Scotland also hosts the pan can van, which takes the message about pancreatic cancer awareness into our communities. It goes to events and into our town centres, and the staff explain to people how to look out for the symptoms of the cancer. The pan can van will be outside the Parliament tomorrow, and I encourage all my colleagues to visit it.
I also must mention the indomitable Lynda Murray, whose advocacy for the pancreatic cancer cause cannot be overstated. The death of her father, William Begley, has inspired her to campaign relentlessly for a patient pathway that will give people a chance that her father did not have.
This summer, Lynda linked me in with the Scottish HepatoPancreatoBiliary Network, or SHPBN, hepatocellular carcinoma and pancreatic cancer patient pathways improvement project. Wish me luck, because I am going to have to say that name again. The Scottish HepatoPancreatoBiliary Network aims to ensure equity in care for patients throughout Scotland with cancer of the liver, pancreas, gallbladder and biliary tree. The Scottish Government has awarded funding of £653,000 to that new SHPBN project to help to streamline and shorten the staging phase and, simultaneously, to enhance patient care and support through communication. I thank all the clinicians who are involved in the project—in particular, Ross Carter and Anya Adair—for their work.
Despite the grim statistics that we encounter, there is a well of innovation around pancreatic cancer. I could go on about areas such as Precision-Panc, but I know that we are really busy tonight and that those areas will be covered by colleagues in the chamber.
My final ask of the minister is to look at stereotactic ablative radiotherapy, or SABR, for treating locally advanced pancreatic cancer. That is currently being piloted in England. I ask the Government to look with interest to the success of that project as another way of fighting this cancer.
Continued investment, training, research and cultural shifts to holistic care are vital if we are to overcome pancreatic cancer. I hope that, one day, this annual debate will not need to take place and that people and families who are affected by pancreatic cancer can look back to this time as one of change.
Thank you, Ms Adamson. I know what you mean about taking the dog for a walk. I have one of those—he decides that he does not want to come back home with me all the time.18:16
The pancreatic cancer ribbon is purple. It represents the love of one daughter for her mother. Rose Schneider died after battling pancreatic cancer, and her daughter founded the Pancreatic Cancer Action Network to support those affected. Purple was Rose’s favourite colour.
Tomorrow evening, as part of world pancreatic cancer day, Dunoon landmarks will be bathed in purple light to reflect the love of a family and a community for one of their own: local firefighter David Colquhoun. David was diagnosed with pancreatic cancer in September this year. On behalf of David and his family, I thank my colleague Clare Adamson for ensuring that the Scottish Parliament plays its important role in raising awareness of pancreatic cancer.
David’s sister-in-law, Jacqueline Kennedy, said to me yesterday:
“All cancers need to be up there. We need people to talk about them.”
As Clare Adamson said, pancreatic cancer is the deadliest common cancer in Scotland. The five-year annual survival rate is only 5.6 per cent. Awareness levels of it in Scotland are low. Fifty-five per cent of people know almost nothing about the disease. Jacqueline is right: we need to talk about it.
David is Dunoon through and through. He has his own roofing business and is employed as a firefighter in Dunoon fire and rescue service. In August this year, he was one of the heroic firefighters who risked his own life during the horrific fire in Argyll Street. He has given much to his community. Tomorrow, his community will show its support for him and help to raise awareness of the key symptoms of pancreatic cancer.
The family wanted to use what they were experiencing to improve the prospects of others. By bringing their voices, commitment and energy, they are helping to change the pancreatic cancer story across Cowal. David’s daughter and her friends organised a sponsored wear purple day at Dunoon grammar school, and friends and family have taken on individual walking challenges. All are raising funds for Pancreatic Cancer Action Scotland and Pancreatic Cancer UK. Tomorrow evening, there will be a walk through the town in which people will visit all the purple-lit landmarks, from Dunoon fire station to Dunoon Castle House Museum.
The past couple of months have been incredibly tough, as David, his wife, his children, his immediate family and his friends have come to terms with the diagnosis, but the support that they have received from NHS Scotland as well as Sheila, their amazing Macmillan Cancer Support nurse, has been a huge help. Pancreatic Cancer UK and Pancreatic Cancer Action have also been great. Both charities work tirelessly for people who are living with and affected by pancreatic cancer. They support innovative research to find breakthroughs that will help how pancreatic cancer is understood, diagnosed and treated.
One example of that is pancreatic enzyme replacement therapy, or PERT. A tablet replaces the digestive enzymes that many people with pancreatic cancer can no longer produce. Only one in three people with pancreatic cancer in Scotland is being prescribed PERT. However, fortunately, Scotland is acting on that issue and leading the way in transforming PERT prescription rates.
I will finish with simple and honest words from Jacqueline that ring true for any illness, but even more so for pancreatic cancer, as it does not present in an obvious way. Jacqueline said to me:
“Keep listening to your body, and keep going to the doctor.”18:19
November is pancreatic cancer awareness month and tomorrow is pancreatic cancer awareness day. I welcome the opportunity to speak in the debate and to show my support. It is a fantastic chance for the pancreatic cancer community to come together to raise awareness and funds, and to remember loved ones who have, sadly, died of the disease.
Raising awareness is key, because two thirds of people in the United Kingdom cannot name a single symptom of pancreatic cancer. Even more worrying is that around half of pancreatic cancer patients will visit their general practitioner three times because of their symptoms before being referred to hospital.
Pancreatic cancer is the deadliest common cancer in Scotland. Only one in four of those who are diagnosed with it survives beyond a year. In the UK, 10,000 people are diagnosed each year, yet pancreatic cancer receives only 2 per cent of national cancer research funding, despite being the fifth-highest killing cancer.
Scotland is leading the way in pancreatic cancer innovation. For example, Precision-Panc is a major research programme that is being developed and run at the Beatson West of Scotland Cancer Centre in Glasgow. It collaborates with world leaders from the University of Glasgow, the Cancer Research UK institutes at the Beatson and in Cambridge and Manchester, the Institute of Cancer Research in London, the University of Oxford and the national health service.
My life before Parliament allowed me unparalleled access to the surgical treatment of this deadly cancer. I worked alongside upper gastrointestinal surgical consultants from across the country, including Ross Carter who was mentioned by Clare Adamson. I know from experience the complex nature of the surgery that is needed to treat pancreatic cancer. The specialist surgeons are dedicated and are committed to adopting innovation to reduce surgical operating time even by the slightest margins, and to seeking new ways to reduce surgical risk and post-operative complications. They work collaboratively across the NHS to do all that they can to increase their patients’ survival.
However, the outcomes following the potentially lifesaving surgery are still a long way from being acceptable. If a patient is diagnosed in time for surgery, the?five-year survival rate increases to around 30 per cent. We must diagnose people far earlier, so that they will live longer and experience better quality of life.
For anyone who receives a diagnosis of pancreatic cancer, as my friend’s mother has, life stops—albeit briefly—and family and friends must respond quickly. My friend Mike had to return from Australia: the only saving grace was that he was able to return to see his mum, which would not have been possible a year ago.
A diagnosis of pancreatic cancer affects every aspect of life and brings emotional, financial, and practical problems that can last long after treatment ends. If anyone who is in that position is listening to the debate today, I take the opportunity to direct them to the practical, emotional and financial support that is offered by Macmillan Cancer Support. Anyone can, as a first step, call their telephone helpline on 0808 808 00 00, or go to the Macmillan website for help.
I thank Clare Adamson for bringing the debate to Parliament, and for helping to raise awareness of pancreatic cancer.18:23
I congratulate Clare Adamson for securing the debate. I know that she has a long-standing interest in the issue. I commend her initiative and her opening speech, which was made with compassion and real understanding of the issues.
It is important not only that we take the opportunity to recognise pancreatic cancer awareness month, but that we strive to improve the response to that dreadful disease. I will use the debate to ensure that the voices of some of my constituents who have been affected by pancreatic cancer are heard here. This is the 10th anniversary of pancreatic cancer awareness month, with world pancreatic cancer day being marked on Thursday.
More than 9,000 people die of the disease across the UK annually. Tragically, that is often within weeks of diagnosis. We need to raise awareness in order to save lives. Public awareness levels are really low: 52 per cent of the public know almost nothing about the disease and 73 per cent cannot name a single symptom. It has, mainly due to late diagnosis, the lowest survival rate of all the cancers.
A constituent of mine, Kayleigh Martin, contacted me to ask whether I would raise awareness of pancreatic cancer. It is an honour to do so in Parliament on her behalf. Kayleigh lost her mum, Helen Carson, to the disease in December 2020, only three months after diagnosis. Helen worked at the Scottish Trades Union Congress for 40 years—a job that she enjoyed very much. She was also a very proud Bankie, born and bred.
Kayleigh is pushing for better treatment nearer to people’s homes and increased awareness of the disease. She feels that the general public and health professionals need to be more aware of the signs and symptoms of pancreatic cancer in order to enable quicker diagnosis. Her experiences have also convinced her of the need for enhanced end-of-life care and support. Better communication and streamlined services are essential to those who are impacted to enable them to use the time that they have left to greater effect.
Helen attended the New Victoria hospital and the Glasgow royal infirmary for further investigations, which left her exhausted and fatigued. Helen’s disease was found to be so far advanced that treatment with chemotherapy was not an option. She felt that if information had been available to her sooner, that might have allowed her to spend more precious time with her family.
Another of my constituents, Kirsteen Smillie, also wants more awareness of this terrible disease, to which she lost her father, Donald Langan. Kirsteen’s dad had a bit longer with his family; he lived for a year and a half after being diagnosed. During those final months, he had chemotherapy, prior to extensive surgery, during which several of his major organs were removed. Unfortunately, when the cancer returned to his lungs, he lived only another nine days.
Kirsteen and her mum, Christine—Donald’s beloved wife—and their family continue to fundraise to help to raise awareness and to continue research into the terrible disease. Throughout November, they are taking part in Pancreatic Cancer UK’s “10,000 steps a day in November” challenge. I wish all the family the very best in their endeavours.
Those are the heartbreaking real-life experiences of some of my constituents, which highlight the importance of early diagnosis. We must ensure that compassionate care and support are there when people need them. As a member of the nursing team at St Margaret of Scotland Hospice, I saw at first hand how quickly patients deteriorate and die from pancreatic cancer. Unfortunately, late diagnosis resulted in palliative and end-of-life care being the patients’ only options. I will never forget the impact that the cancer had on families, whose love, compassion and support were unwavering and selfless. That is reflected and recognised in the testimony that I have given on behalf of my constituents.
I welcome the debate and everything else that has been done to promote the importance of early diagnosis. I am humbled by the determination of my constituents to see more action on the matter. In memory of those who have lost their lives to this terrible disease, we must work together collectively in order to do all that we can to increase awareness of pancreatic cancer and aim for more positive outcomes.18:28
I thank Clare Adamson for bringing this important debate to the chamber. On behalf of Scottish Labour, I am proud to highlight the importance of pancreatic cancer awareness month, and of marking world pancreatic cancer day tomorrow.
Pancreatic cancer is truly one of the most aggressive cancers and is perhaps, sadly, the deadliest common cancer in our country. It is a cancer that often brings an abrupt end to the lives of the people whom it targets. In my local health board, NHS Ayrshire and Arran, it has killed between 50 and 70 people every single year for the past decade. That is 50 to 70 more families being devastated year after year.
A close family friend died from pancreatic cancer many years ago and I am sure that today he will be thought of by so many people, including my parents and family, who have some very fond memories of him.
The Covid-19 pandemic has impacted our lives in many ways, but one of the most concerning impacts has been the reduction in levels of early cancer diagnosis. Staff shortages, pressure on the NHS, and long general practitioner waiting times have, among a host of other factors, contributed to figures that Cancer Research UK calls “devastating”.
Admittedly, the context of there being a global pandemic has impacted on the ability of health services across the world, but in Scotland we must act with purpose to reverse those concerns, resume early detection and give those who have cancer the best chance of life.
However, it is absolutely devastating that, even after diagnosis and treatment, many of the people who are diagnosed with pancreatic cancer are not given that chance of life, due to their symptoms not being noticed or treated with concern until too late. Therefore, it is important to highlight again that the
“key symptoms of pancreatic cancer include abdominal or back pain or discomfort, unexplained weight loss or a loss of appetite, yellowing of the skin or eyes and/or itchy skin, a change in bowel habits, nausea or vomiting, and indigestion that does not respond to treatment”.
Just as important is that it be made very clear to the public that the NHS is—even although it is under strain and is still suffering from staff shortages—open and accessible, and that if a member of the public has concerns, it is better to have a medical examination than to wait until it is too late. The importance of public awareness of the symptoms and of the fact that treatment and examination are available, should people need it, cannot be overstated. Everyone in the chamber would agree that any person who is concerned should go and seek treatment.
As Clare Adamson rightly mentions in her motion, despite the fact that some progress has recently been made, the survival rates for pancreatic cancer have remained stubbornly similar for far too long, so it is incumbent on all of us to do more, to act and to raise awareness of this awful disease in order to help people to secure the early diagnosis and treatment that can be so vital to their future.
As I often do, I want to bring to members’ attention the health inequalities that underpin cancer survival rates. According to Public Health Scotland, greater deprivation is linked to poorer survival rates from cancer. We must strive to do something about that. It is unjust and unfair that that remains the case in Scotland in 2021. Much more work needs to be done to address the clear health, social and economic inequalities that mean that a person’s postcode can make the difference between their having a stronger chance and their having a weaker chance of survival from the deadly disease.
I thank the organisations, which many members have mentioned, that have done so much work to raise awareness of pancreatic cancer. The value and importance of their work cannot be overstated; as parliamentarians, we must do all that we can to support them.
As we continue to make progress in our recovery from the Covid-19 pandemic, as we hope we will, the Scottish Government needs to ensure that its priorities include addressing late diagnosis and focusing on early intervention. It must also do more to tackle the widespread health inequalities that, to this day, remain a stain on our society and adversely impact people from our most deprived areas.
You need to wind up now.
Again, I wish all those who are involved in pancreatic cancer awareness month the very best, and I thank Clare Adamson.
Thank you, Ms Mochan.
I am conscious of the number of members who still want to contribute to the debate, so I am minded to accept a motion without notice, under rule 8.14.3, to extend the debate by up to 30 minutes. I invite Clare Adamson to move such a motion.
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Clare Adamson]
Motion agreed to.18:33
I am grateful to Clare Adamson for securing this important debate to highlight pancreatic awareness month, and to Pancreatic Cancer UK for its briefing.
In the past 18 months, the world has, of course, been thrown into an unprecedented public health crisis. As a result, there has been less focus on other illnesses and diseases. Sadly, as other speakers have noted, the statistics show that, even without the additional strain on health services across the UK, pancreatic cancer is one of the deadliest and hardest to detect cancers. It clearly requires more attention.
One of the main problems with pancreatic cancer is that it is difficult to diagnose. Even short delays between diagnosis and having surgery or chemotherapy drastically lower the chances of survival.
According to the NHS Inform website, in the early stages, a tumour in the pancreas does not usually cause any symptoms, and the first noticeable symptoms, such as back or stomach pains that come and go or unexplained weight loss, can be caused by many different conditions. As a result, people commonly attend three or more GP appointments before hospital referral, and therefore many people are diagnosed through emergency presentation, leading to very poor outcomes. Nearly 1,000 people in Scotland per year are diagnosed with pancreatic cancer, with around 50 of them residing in the NHS Forth Valley area.
In January, University of Stirling student Keir Morton helped to raise thousands of pounds for pancreatic cancer research in memory of his dad, who died just over two weeks after diagnosis. In July, Jennifer Bairner from Stirling also raised money for pancreatic cancer research after her mum died, again less than two weeks after diagnosis. She had shown no symptoms at all, other than exhaustion and loss of appetite.
Our NHS does an incredible job in oncology, and of course the support of Macmillan and Cancer Research is amazing, but there is much more to do. We need to raise awareness among health professionals of the use of pancreatic enzyme replacement therapy, or PERT for short, which could help people to deal with this cancer. Education is key. We know that dedicated research and awareness campaigns drove up early diagnosis of breast cancer, which has gone from being one of the most lethal cancers to one of the most treatable and survivable. A similar focus is now required on pancreatic cancer. The message is clear: early detection and treatment are essential.
I welcome the Scottish Government’s action plan for cancer services. Additional funding for our health boards will support better access to diagnostics and treatment, and the creation of early cancer diagnostic centres is a significant step forward. Patient pathways through cancer services help to define a patient’s overall experience and access to treatment, as well as, potentially, their outcomes. I therefore look forward to hearing of a successful redesign of the pancreatic cancer pathway.
As we know, Scotland’s general health, including cancer rates, is the result of decades of structural inequality that the Scottish Government continues to tackle, and we cannot be complacent.18:37
I, too, congratulate Clare Adamson on again securing a members’ business debate on the issue, and on all her campaigning on it, which she has done with distinction for many years in the Parliament. As the co-convener of the Parliament’s cross-party group on cancer, I am pleased to take part in this year’s debate, as I have done, along with Clare, every single year. I look forward to seeing lots of purple being displayed across landmarks and across our country—especially on social media, which I think has become an even bigger hit—as we aim to increase knowledge and understanding of pancreatic cancer.
As with all cancers, early detection and intervention are critical. As members have touched on, the five-year survival rate for pancreatic cancer is still just 5.6 per cent. Evelyn Tweed referred to other more survivable cancers, for which the average five-year survival rate is nearly 69 per cent. Arguably, with pancreatic cancer, early detection is even more critical than it is with other cancers, as the five-year survival rate increases to around 30 per cent among those who are diagnosed earlier and who are able to access life-saving surgery. It is a huge concern that 80 per cent of people with pancreatic cancer are still not diagnosed until the cancer has developed to an advanced stage.
Tomorrow is world pancreatic cancer day, and this year’s theme is “It’s About Time”. Improving awareness of the risks and symptoms of pancreatic cancer is crucial, and it is important that we all work to ensure that we improve the survival rates.
I commend Pancreatic Cancer Action Scotland on its mission of making the 2020s the decade of change for pancreatic cancer. We all want and can sign up to that. Over the past 50 years, there has been a lack of significant improvement in survival rates, so we need a concerted effort to ensure that more people are diagnosed early and survive the disease.
The past year and a half has been dominated by Covid-19, and the shift to focus our national health service on treating people for the virus has resulted in public health messaging shifting away from encouraging people to come forward and present their health concerns. We all share the concern that that will impact on outcomes for all cancers, and recent research by Pancreatic Cancer UK revealed that 31 per cent of Scots say that they are delaying seeking treatment. We need to turn that around and ensure that the message is sent out that people should not delay taking concerns to their GP or other medical professionals.
Of those people who are less likely to seek help, around half of them—49 per cent—say that they do not want to be a burden on the NHS, while 24 per cent say that they are still concerned about contracting Covid-19. Making people aware that our NHS is up and running and that it wants people to present is very important. I hope that the debate sends the message that people should be getting checked out if they exhibit any of the symptoms that other members have outlined.
It is clear that we have a long way to go to improve survival rates. Sadly, we have not seen the 5 per cent rate get to 10 per cent, 15 per cent and then 20 per cent. When the minister closes the debate, I hope that he will point out what work will be taken forward to review patient pathways, which is one of the key things that we all want to be looked at, especially post pandemic.
I thank all those who have worked and campaigned over many years to support the work of Pancreatic Cancer UK, including my constituent Kim Rowan and the wonderful Lynda Murray. They have done so much work; sadly, they cannot yet come to the Parliament, but I am sure that they will be here for next year’s debate. That is our hope, too.
Clare Adamson started by talking about hope, which is really important. For me, the person who really personifies that is our former MSP colleague, John Scott. John is well and living his happy post-politics life to the full. Examples of people who have successfully fought pancreatic cancer are really important for people and their families who are facing the hell of a pancreatic cancer diagnosis.
The debate has once again given us the opportunity to highlight the great work of Pancreatic Cancer UK and the principles and work of pancreatic cancer awareness month. Much progress needs to be made in the years ahead, and I hope that MSPs from all parties will continue to speak out and keep pressure on ministers. Above all, I agree with what Clare Adamson laid out: there is hope, and we should all work towards a better future.
Thank you, Mr Briggs. Please convey our best wishes to John Scott—that was good news.18:43
I thank Clare Adamson for what is, I think, her fifth consecutive year of securing a debate on pancreatic cancer awareness month. The dedication that she shows to the cause provides us with a platform to raise awareness of this terrible disease and of its impact on people who suffer from it and on their loved ones.
When we read out statistics on pancreatic cancer—this is true of any cancer, but particularly pancreatic cancer—I am always aware that people will be watching the debate who may have just received a diagnosis, or who are in treatment or are close to someone who is. The survival rates of the disease are difficult to hear, and people with a diagnosis will be only too aware of what it could mean for them. The reality of those rates makes it particularly important that we have this regular debate and use our platform to shine a light on how to detect the disease early.
I did not speak in last year’s debate but I sat and listened to every speech. It was particularly poignant because John Scott was back in the chamber and he was looking a lot better. It is great to hear that he is continuing to do well, because that gives us hope that this is a cancer that people can survive.
In last year’s debate, Clare Adamson talked about vital research and clinical trial work at our universities to improve future treatments and outcomes. In particular, the University of Glasgow, partnering with the Beatson institute and other partner universities across the UK, has worked on the Precision-Panc platform.
That research is investigating the molecular profile of individuals with pancreatic cancer and is bringing together expertise from 20 UK hospitals that offer clinical trials. Those trials use the genomics of the patient and their tumour and offer hope for the 85 per cent of pancreatic cancer patients who are not eligible for surgery. Maybe we can get to the future that Clare Adamson described, where we do not have the statistics that we have now.
As everyone says, early diagnosis of pancreatic cancer is vital. For those who are diagnosed in time for surgery, that five-year survival rate improves by 30 per cent. I applaud the awareness-raising campaigns of Pancreatic Cancer Action in Scotland, and I will of course be sharing their material as widely as I can. It is important that we MSPs use our platforms to inform our constituents of those early symptoms. People watch the videos that we put up on social media, so we should use the platforms that are available to us to tell people what the symptoms are, and I will close my speech by doing so.
People should get themselves to their GP if they have any of the following symptoms. If their back or stomach hurts, that could be because the tumour is pushing against nerves or organs near the pancreas and blocking their digestive tract. Similarly, if they feel bloated, they should get that checked, because pancreatic cancer can cause digestive problems such as gas, bloating and a build-up of extra fluid in the abdomen. Other symptoms are loss of appetite, indigestion, nausea and constipation or diarrhoea. If someone is losing weight and does not know why, it could be because cancer is causing their body to burn more calories than usual and is breaking down their muscles and decreasing their appetite. If someone’s skin or eyes look yellow, that could be jaundice caused by a tumour blocking the bile duct, which ordinarily allows bile to flow from their gallbladder into their small intestine.
People should be aware of all those symptoms. As Miles Briggs said, people should not think that they should not go to their doctor because of the pandemic. All those symptoms are signals that something could be wrong. Hopefully, it will turn out that nothing is wrong, but people must get those symptoms checked out.18:47
I thank Clare Adamson for securing today’s important debate and commend her for her consistent campaigning on pancreatic cancer.
As we have heard, pancreatic cancer is Scotland’s deadliest common cancer, and just under 1,000 people in Scotland—10,000 across the UK—are diagnosed with pancreatic cancer each year.
Despite being the 12th most common cancer in Scotland, pancreatic cancer is responsible for the sixth-highest number of cancer deaths, which means that is has a significant and disproportionate impact. As members may know, I still practice part-time as a GP and I have seen at first hand the truly devastating impact that pancreatic cancer has on patients and their families.
A significant issue is that the disease’s symptoms are not widely known. I will not repeat them, as Gillian Martin and others have already listed them, but I hope that people who are watching this debate are able to understand what they are. According to Pancreatic Cancer UK, two thirds of people in the UK cannot name a single symptom of this disease. As a result, less than 20 per cent of people with pancreatic cancer are diagnosed at an early stage, and seven in 10 people will never receive any treatment at all. Tragically, around 80 per cent of people are diagnosed when the cancer is at an advanced stage and it is too late for life-saving treatment. Currently, no screening or early detection tests exist to help doctors to diagnose the disease.
When I recently met Pancreatic Cancer UK, the focus of our meeting was support, because, when someone is diagnosed with a cancer that kills one in four patients within a month, they need all the support that they can get. However, currently, there are all too many missed opportunities to provide the emotional support that is needed. At key moments—diagnosis, the beginning and the end of treatment, before and after surgery—patients are really vulnerable and they need help because they struggle with their mental health.
Discovering the poor survival statistics for pancreatic cancer is a difficult moment for any patient and is one through which people need to be effectively and thoroughly supported with specialist mental health support. In my view, the most experienced people to speak with, other than those in the NHS, are those involved in Pancreatic Cancer UK, which has a dedicated helpline—Sue Webber read out its number earlier. It is staffed by specialist pancreatic cancer nurses, who provide expert support with symptoms, medication and anything in between, as well as a much-needed listening ear.
That is why I want to ensure that everyone with a diagnosis of pancreatic cancer is immediately signposted to Pancreatic Cancer UK’s support line. Currently, only 10 per cent of people who are diagnosed with pancreatic cancer in Scotland access that free service. It is my mission today, and it should be our mission over the coming year, to drive up awareness of the service, so that everyone with a diagnosis, or even just a suspicion of pancreatic cancer, gets the support that they need from day 1. We need to reach that remaining 90 per cent.
I want to see signposting to the Pancreatic Cancer UK support line included, by default, in all communications that are shared with those who are diagnosed. I also want to go further. When people are diagnosed with cancer—any cancer—I propose that they be linked with the appropriate leading third sector organisations, such as Macmillan Cancer Support, Bowel Cancer UK, Pancreatic Cancer UK and other specialists.
I would like to see all patients with cancer get the appropriate third sector agency telephone number and website information, together with a leaflet, in the diagnosis letter that they receive, and when they are in the surgery with their doctor. That would enable vulnerable patients to get wraparound support straight away, and the specialist support that they need when they speak to one of the nurses who staff many of the telephone lines. I ask the minister to implement my suggestion, because it would be a cheap way of providing help.
I apologise to members in the chamber for having to leave early, but I must attend a Diwali event that is being hosted in the Parliament. However, I felt compelled to speak in the debate, despite not being one of the Conservative members who were down to speak today.18:51
I welcome the opportunity to speak in this important debate ahead of world pancreatic cancer day tomorrow, 18 November, and I congratulate Clare Adamson, who is sitting right in front of me, on securing it. Clare has done a huge amount of work to raise awareness of pancreatic cancer, and has led the debate each year since 2017.
I am also glad that Miles Briggs and Gillian Martin mentioned former MSP John Scott, and it is good to hear how well he is doing. I thank the clinicians and staff who care for people with pancreatic cancer. I remind members that I am still a nurse, and many of those folks are my former colleagues.
It is worth noting that the Covid pandemic has created many additional challenges for cancer services across Scotland. I agree with Pancreatic Cancer Action Scotland that increasing awareness, encouraging awareness of symptoms earlier, improving pathways to diagnosis, and support, information and care are more important than ever before.
As colleagues across the chamber have stated, pancreatic cancer is currently the deadliest common cancer in Scotland, with statistics indicating that, each year in Scotland, 800 people die within just two weeks of a diagnosis. That is a pretty stark statistic.
The Scottish Government has invested in research, and its current action plan, “Recovery and Redesign: An Action Plan for Cancer Services”, recognises the disease and less survivable cancers. The announcement of £653,000 of funding to support the Scottish HepatoPancreatoBiliary Network’s improving pancreatic cancer pathways project is extremely welcome.
The example of research on which I will focus my comments, and which Gillian Martin also touched on, is the Precision-Panc platform. I spoke about it last year, too. Not all pancreatic cancers are the same. Precision-Panc clinical trials are delivered through the NHS, and match people who have a diagnosis of pancreatic cancer to the clinical trial that is most likely to work for them. Precision medicine is about tailoring treatments to an individual’s cancer. The trials, involving chemotherapy, are based on the genomics of the patient and their tumour.
The Precision-Panc platform brings together expertise from the University of Glasgow, Cancer Research UK, the Beatson Institute for Cancer Research, the CRUK Cambridge institute, the CRUK Manchester institute, the Institute of Cancer Research in London, the University of Oxford and the wider NHS.
There is excellent evidence that participation in clinical trials is associated with better outcomes for patients, so there can be optimism. Those types of clinical trials allow researchers across the country to share expertise and knowledge, as well as to create and share infrastructure, which leads to trials that are quicker to set up and recruit for.
The Precision-Panc platform has a proven track record of delivering positive outcomes and research for pancreatic cancer patients, so there can be optimism, as Clare Adamson has already stated. Development of biomarkers, prognosis and response to treatment have taken place and the platform has successfully identified why pancreatic cancer is resistant to some drug therapies.
Current trials are PRIMUS 001 to 005 as well as the master protocol, some of which are now reaching the clinical report stage, which is scheduled for early next year. I ask the minister to give a commitment that the Scottish Government will continue to support that vital work.
I briefly want to highlight the issues that my constituents across Galloway face when accessing treatment for pancreatic and other cancers. Despite living in one of the most remote and rural parts of Scotland, people who live in Dumfries and Galloway, including in Stranraer and Wigtownshire, do not have access to non-means-tested travel reimbursement to and from treatment appointments. I know that the minister is aware that I have pursued the matter and I ask that she continues to assist me in that work for constituents.
I again congratulate Clare Adamson on introducing the debate and I welcome the on-going work to advance treatment of pancreatic cancer, which means that we can continue to be optimistic.18:56
I thank Clare Adamson for bringing this important debate to the chamber and members for their informed contributions.
As we have heard, pancreatic cancer can be ruthless. Recently, I was told a touching story about a family whom pancreatic cancer has devastated, and they have given me permission to share it today. Bridget, a mother of three and grandmother to 13, was 79 when she died from pancreatic cancer, just three months before her 80th birthday. She went back and forth to the doctor’s for two years. She was told that the pain in her back was due to wear and tear; that the night sweats were due to her age; that indigestion was a hiatus hernia; that the weight loss was from her diabetes; and that her low mood was because she was depressed due to caring for her husband.
However, when a new doctor joined the practice, Bridget was sent for an ultrasound, which detected black lesions on her liver. The consultant thought that it could be secondary cancer that had spread from somewhere else. Bridget was referred for a magnetic resonance imaging—MRI—scan that never happened, because she was rushed to hospital screaming in uncontrollable pain shortly after her ultrasound. She was diagnosed with pancreatic cancer, which had spread to her liver and lungs, and died at home 40 days after the diagnosis.
Tragically, 17 hours after Bridget died, her husband Dick passed away—of a broken heart, the family said, after watching his wife of 40 years suffer from that cruel disease. That was seven years ago, but the heartache continues daily for Bridget’s family.
Have we made progress since 2014? We have heard from colleagues the facts and figures that surround pancreatic cancer, the most shocking of which being that it has the lowest survival rate of any of the most common cancers. If Bridget’s story tells us anything, it is that early detection is key and that knowing the signs is just as important.
Pancreatic Cancer UK reports that two thirds of people in the UK cannot name a single symptom of the disease. We need to change that. Can members spot them? We have heard some of the symptoms thanks to the earlier speakers, but it is important to reiterate them: back pain, stomach pain, weight loss and yellowing of skin or eyes, as well as the ones that Bridget had, such as hot flushes, the shivers and indigestion.
I thank people such as Gavin Oattes, a Troon-born author and comedian, whom Pancreatic Cancer Action Scotland asked last year to share the story of his father, who died from the disease. Gavin set out to spread awareness of the symptoms and to encourage people to seek out a diagnosis. His father Eric died at just 65. He had been given six months to live, but fought bravely for 16 months. His symptoms presented as indigestion.
The message that members have repeated is that early diagnosis is key. Under Scotland’s cancer recovery plan, three early diagnosis centres are being piloted across Scotland, including one at University hospital Ayr, which I visited earlier this year.
The centre, which comes under NHS Ayrshire and Arran, is dedicated to early diagnosis, with the aim of getting patients tested and, if required, referred to a specialist within 21 days. That is life saving and will help to pick up cancer earlier if patients do not meet referral guidelines and have non-specific symptoms like Bridget’s weight loss and fatigue.
We are getting better, but we have a long way to go. Let us look at Australia. Although Australia has one of the highest cancer rates in the world, it also has one of the lowest mortality rates for cancer. Why is that? According to the World Economic Forum, the answer is sound policy and planning. Every country needs a cancer control plan in which data is monitored and which aims to treat and prevent cancer.
We need to continue to raise awareness of the signs of this cruel disease. We owe it to people such as Bridget and their families. The message, again, is: know the signs and symptoms, visit your doctor and trust your instincts.19:00
I thank Clare Adamson for bringing the motion to the chamber, and all my colleagues for their powerful and often personal contributions. It is wonderful to hear that John Scott is doing well, and it has been great to see so many members actively engaged in the debate, which has given us the opportunity to reflect on the work that we have achieved and what further work there still is to do.
In closing the debate, I will touch on a few of the points that have been raised, but first I want to make sure that members know that the Scottish Government buildings will be lit up to raise awareness tomorrow evening, on 18 November, world pancreatic cancer day.
Raising awareness of pancreatic cancer and its common symptoms—back pain, yellowing skin, indigestion, tummy pain and weight loss—is absolutely crucial in detecting this cancer early. We know that the earlier that cancer is detected, the easier that it is to treat, which is why we continue to invest in our £44 million detect cancer early programme, with an additional £20 million committed over this parliamentary session.
We know that, over the pandemic, our urgent suspicion of cancer referral rates fell below pre-Covid levels. In order to increase uptake, public awareness campaigns and messaging have run throughout the pandemic to encourage those with possible cancer symptoms to seek help. I am pleased to say that our urgent referral rates are now above pre-Covid levels. I absolutely encourage any individual who may be experiencing common symptoms of cancer to present to their GP. I want to let members know that, from December, we will run a national awareness campaign on the NHS being open, which will include a national door drop.
Unfortunately, pancreatic cancer continues to be one of the less survivable cancers. Pancreatic Cancer UK has stated that only one in four people diagnosed with pancreatic cancer survives beyond a year. The five-year survival rate is even lower, with only 5.6 per cent of people surviving in Scotland, compared with the average five-year survival rate of 69 per cent for more survivable cancers. For those reasons, we have focused on improving outcomes for the less survivable cancers in our national cancer plan.
The Scottish Government works closely with a number of partners to raise awareness of pancreatic cancer and to improve outcomes after diagnosis. Pancreatic Cancer UK is a key partner, alongside the less survivable cancers task force, in continuing to push forward work streams and improve cancer outcomes. We know that, during the pandemic, the need for further support of patients was amplified, with third sector organisations such as Pancreatic Cancer UK seeing a significant increase in helpline calls, with a peak increase of 50 per cent. I thank our third sector partners for their continued work and for their support of cancer patients.
In addition, we are working with the Scottish HepatoPancreatoBiliary Network—I will just use the acronym SHPBN next time—to improve pathways across pancreatic and liver cancers. We have provided £653,000 of funding to the network over two financial years to redesign those cancer pathways. That work is aimed at improving patient outcomes and experiences.
We know that patients with a cancer diagnosis and those around them can be impacted mentally as well as physically by diagnosis and subsequent treatment, as we have heard so powerfully in the chamber this evening. The work of the SHPBN is looking at the investigative and diagnosis stage of the pathway. In order to improve the pathway, a new navigation team will improve communications within the health service and directly with patients. That work is one step that we are taking to increase the support offered to patients. I hope that that responds to the points that Dr Gulhane raised.
The national cancer plan, which sits alongside that work, outlines the development of the single point of contact and our transforming cancer care partnership with Macmillan Cancer Support. A single point of contact will help to ensure that patients are supported in relation to all clinical aspects, including mental health, along their cancer journey. We recently awarded funding to 12 pilot programmes, based across the three cancer networks. The Scottish Government’s partnership with Macmillan Cancer Support will ensure that every cancer patient in Scotland has access to a specialist key support worker who can provide emotional, financial and practical support to those who need it most.
Further to providing patients with support, we must focus on the best available treatment. Many members will be aware of pancreatic enzyme replacement therapy, in which a capsule that replaces the enzymes that the pancreas would normally make is taken. If a person has pancreatic cancer, taking pancreatic enzymes can help them to digest their food. However, as has been mentioned, not all patients are offered PERT at the point of diagnosis, for a variety of reasons. There could be legitimate reasons for not prescribing—for example, perhaps the patient is on a palliative care pathway, or there might be a cultural preference. Equally, many pancreatic cancer patients present as asymptomatic, despite exocrine pancreatic insufficiency. In addition, patients are diagnosed through many different pathways, so not all clinicians have the knowledge and experience to know about the importance of PERT.
Clare Adamson raised the use of stereotactic ablative radiotherapy. I am pleased to inform members that a project was funded in the most recent funding round, with up to £1.6 million committed over two years. We are taking a once-for-Scotland approach to roll out that treatment across Scotland.
The Precision-Panc research, which has been highlighted by a number of members, including Emma Harper, is led by a team at the University of Glasgow, and it is absolutely world leading. Research into precision medicine remains a high priority for the Scottish Government.
In order to inform best practice, the Scottish Government continues to learn from the best available evidence. As members have highlighted, the Scottish cancer patient experience survey, which is run in partnership with Macmillan Cancer Support, has a survivability bias. The survey is designed to be comparable with cancer patient experience surveys that are run in England and Wales.
Will the minister have a look at the timescales in which that survey is delivered? We have heard about the difficulties around pancreatic cancer, and patients have often passed away within the delivery timescale. Will the minister reflect on that?
Absolutely. I am very keen to take that point on board.
In order to capture the experience of patients with a less survivable cancer, we are using tools such as Care Opinion and working with our third sector partners to collate the best available evidence. I am happy to get back to Clare Adamson with any further evidence that we have on that issue.
Members may be aware that NHS England has announced a new national pancreatic cancer audit, on which NHS Wales is partnering it. Fortunately, in Scotland, our partners in the SHPBN have completed audits annually since 2010. The 2013 to 2019 audits are based on quality performance indicators, including some that are specific to pancreatic cancer. The annual audit reports are available on the SHPBN website, and the 2020 audit is currently in progress.
As we have heard, the Scottish Government and all of us in the Parliament are absolutely committed to increasing awareness of pancreatic cancer and improving cancer patients’ experiences and outcomes. I thank all our partners who help us in achieving those goals, from the clinicians who work in the NHS to our third sector partners, who have tirelessly supported patients. Together we can improve, and together we can achieve our ambitions.Meeting closed at 19:09.