Pancreatic Cancer Awareness Month 2022

It is a privilege to open this debate to mark pancreatic cancer awareness month in our Parliament—how wonderful it is to see the gallery bedecked in purple by supporters this evening. It is great to be back in the chamber in person for our sixth debate to mark awareness month. It is testament to the extraordinary efforts of campaigners, many of whom are in the gallery, that we can now say that the debate is an annual event.

I just want to put on the record that I note the presence in the gallery of my constituents Wendy and Ian Thomson, who tragically lost their daughter at a very similar age to the age that my daughter is now. I applaud and salute their bravery and efforts in cascading and getting out information about this tragic disease.

I welcome that intervention from my colleague.

What has always struck me about the debate is the number of MSPs who have—as has just been demonstrated—personal or immediate knowledge of pancreatic cancer through a family member, friend, loved one or constituent.

I send my best wishes to John Scott, the former Deputy Presiding Officer, whose account of his wife’s passing from this disease, and the challenges that he faced as a result, left not a dry eye in the chamber a few years ago. Although my interest in the subject was driven by my former employee Nicky McManus, whose mum sadly passed from pancreatic cancer, I would like to pay special tribute to Mark McCall this evening.

It will come as no surprise to anyone who knows me that I am about all things safety in the Parliament, and I hosted the Scottish Community Safety Network event earlier this year. Mark helped to start the Fife Council safer communities team in 2016. He was also a director of the Scottish Community Safety Network, and his leadership and expertise made a lasting impact on safety policies and on his colleagues working in that area. Mark sadly passed away in September after a diagnosis of pancreatic cancer, and the tributes that poured in for him show the enormous impact that he had on his community. His legacy will last, and I thank him for his wonderful contribution.

We have in the gallery Mark’s family: Claudette, Ross, Jordanne, Amy and Sarah—you are all very welcome. I thank everyone who is in the gallery this evening; you stand out as some of the most dedicated, knowledgeable and tenacious campaigners with whom I have worked. It is through your tenacity that we have made strides in raising the policy profile of this devastating disease, and we have put pancreatic cancer on the national agenda. I thank the Cabinet Secretary for Health and Social Care and the Minister for Public Health, Women’s Health and Sport for their engagement in the areas that we have highlighted over the years.

However, public awareness of the symptoms of pancreatic cancer remains low, which is a concern. That is why pancreatic cancer awareness month is important, as ever. Early diagnosis is crucial. We know that, and we speak every year about the need for early intervention. The message cannot get lost.

The following statistics highlight the challenge that we still face and show why this debate is so needed. According to Pancreatic Cancer UK, less than 20 per cent of people with pancreatic cancer are diagnosed at an early stage. Seven in 10 people with pancreatic cancer will never receive any treatment, and only one in 10 will receive surgery. About half of pancreatic cancer patients visit their general practitioner with symptoms at least three times before being referred to hospital, while 16 per cent visit their GP seven times or more before receiving a correct diagnosis.

According to Pancreatic Cancer Action Scotland’s October survey, 62 per cent of people in Scotland know “almost nothing” about pancreatic cancer. Meanwhile, two thirds of people in the United Kingdom cannot name a single symptom, so I want to remind people of the symptoms to look for. Common symptoms include back pain, indigestion, tummy pain and unexplained weight loss or loss of appetite. Anyone with jaundice or yellowing of the eyes or skin should immediately go to an accident and emergency department.

Research that was commissioned by Pancreatic Cancer Action Scotland found that a new diagnosis of diabetes that is not associated with weight gain can occur one to three years before a diagnosis of pancreatic cancer. With 30 per cent of pancreatic cancer patients presenting with new onset diabetes before the diagnosis of cancer, we have the potential to diagnose 270 more patients a year at an earlier stage.

As Pancreatic Cancer UK has exemplified with its new “No Time To Wait” campaign, people cannot afford to wait and have a late diagnosis. For context, Scotland’s five-year survival rate is just 4.6 per cent. Those who are diagnosed in time for potentially life-saving surgery have a five-year survival rate of about 30 per cent. With early intervention, people can be diagnosed, live longer and have a better quality of life.

Scotland is leading in that regard. I have spoken previously about the work of Precision Panc in Glasgow, and my colleagues will highlight some of that good work today. I have the pleasure of continuing to work with Lynda Murray, whose father, Mr Begley, died from pancreatic cancer. She keeps me abreast of the progress of the work of Ross Carter and his colleagues on the pancreatic and hepatocellular cancer pathway improvement project, or PHCC PIP for short.

The project commenced phase 1 of its roll-out earlier this year. I understand that the first referrals have already been received, and planning continues for phase 2 of the roll-out, which will be confirmed for Monday 5 December. However, challenges exist. The Royal College of Radiologists warns us that, without immediate measures to grow the pancreatic cancer workforce, treatment success and patient care will be compromised.

We know that the infrastructure of the national health service is under pressure, and we have fewer scanners in the UK than there are in most comparable countries in the Organisation for Economic Co-operation and Development. More generally, getting the right support is crucial. Pancreatic Cancer UK has a team of specialists and pancreatic cancer nurses, but only 125 people called its helpline from Scotland last year.

The third sector is vital, but it cannot be a panacea for support, and I am grateful that successive health secretaries in Scotland have listened and understood the challenges. Pancreatic cancer is uniquely aggressive, and its survival rates are tragically low, but investment in addressing that has increased since we began holding these debates six years ago.

We need to continue to raise public awareness of the symptoms and impact of pancreatic cancer, and we need to consider how current policy deals with it. Pancreatic cancer represents 20 per cent of cancer deaths in the UK, but it receives only 3 per cent of all research funding. Engagement on such issues is essential, and I thank the minister, Maree Todd, the cabinet secretary, Humza Yousaf, and all my parliamentary colleagues who visited the drop-in event that was hosted by Pancreatic Cancer UK earlier this month. The people and families behind the figures are counting on us to listen, and even more to act.

I, too, thank Clare Adamson for bringing the debate to the chamber. She has led six consecutive debates on pancreatic cancer and her dedication to the cause gives us a chance to raise awareness of the symptoms of that terrible disease, which—as we have heard from other members—it is so crucial that we catch early.

In last year’s debate, I said that I am always aware that when we read out the statistics on pancreatic cancer, there will be people watching at home or in the gallery who may have just received a diagnosis, or may be in treatment or close to someone who is. Ahead of this year’s debate, I spoke to my constituent Christine Wilson, who is currently undergoing treatment for pancreatic cancer.

Christine was not well enough to make it to the parliamentary event that Clare Adamson hosted a couple weeks ago, so we had a Zoom call instead. At the time of last year’s debate, she was undiagnosed. She has urged me to relay the message that continuous and strong public messaging around the symptoms is vital.

Christine was one of those people who did not know what her symptoms were, and who went to the doctor repeatedly and had other diagnoses before they actually hit on the right one. In our conversations, she made the point that one of the reasons why her back and stomach pain was not identified as pancreatic cancer was because she did not fit the profile. Her cancer was thought to be something else related to digestion.

I have heard that quite a few times when I have been speaking to colleagues from Pancreatic Cancer UK. The fact is that anyone can get pancreatic cancer. Christine and I are putting out a press release after the debate so that we can jointly get the message out to our local media. She said that one thing that she wants to do is let others know what to look out for. She said that if publicising her story can help others to know about the symptoms, something positive can come out of it. I am happy to help her to do that in any way that I can.

Pancreatic Cancer UK has produced a wallet-sized leaflet—which I am holding up; I hope that the Presiding Officer will forgive me for using a prop—that details some of the symptoms of the disease. Last week, some colleagues from PC UK and I had a wee chat with the minister, Maree Todd, about putting links to PC UK on NHS Inform so that those with a diagnosis can get in touch with the organisation for immediate support. That is especially important for those for whom surgical options are too late.

I promised Christine that I would do what I could today to raise awareness of the symptoms that could be pancreatic cancer so that anyone who has them—as Christine did—will have a better idea of what they mean or could mean and will go to the doctor with that in mind. That is how I will end my contribution. It will repeat what Clare Adamson has already said, but that is the point. We need to repeat what the symptoms are.

I urge people to get to the GP if they have any of the following symptoms. If their back or stomach hurts, it could be that a tumour is pushing against nerves or organs near the pancreas and blocking the digestive tract. Similarly, if they feel bloated, they should get it checked because pancreatic cancer might cause gas, bloating or a build-up of fluid in the abdomen. A loss of appetite, indigestion or nausea is common with people who have pancreatic cancer, as is 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. Finally, if someone’s skin or eyes look yellow, it could be jaundice caused by a tumour that might be blocking the bile that should flow from the gallbladder to the small intestine.

The message from Christine is clear: do not stay silent if you have any of those symptoms. I thank Christine for taking the time to talk to me about her story. Like her, I hope that at least one person watches the debate, listens to all of us, acts on the advice that we are giving and will be able to get life-saving treatment.

I congratulate my colleague Clare Adamson for bringing the subject of pancreatic cancer to the chamber. Clare has been a strong advocate on the subject for a number of years and her continuing endeavours are much appreciated.

We probably all have our own stories to tell about this difficult cancer. My own family’s experience dates back to 1985, when my mother died from the disease. She was taken far too early, at the age of 53. There is never a day when family members do not think about her and this debate helps to keep her with me.

My previous speech on this subject was in 2020. I wonder whether members recall the very moving speech made by our colleague John Scott, who, thankfully, recovered his own health at that time after a long illness. Such powerful contributions help us to get the message out to the Scottish people about the work that is going on and the real hope that progress is being made in the fight against this cancer.

The statistics are challenging, to say the least, with pancreatic cancer having a far lower survival rate than other cancers. Pancreatic cancer is not the most common cancer in Scotland, as it ranks about 12th in the list, but it climbs up the table due to the number of deaths it causes. That is why more work is needed to fight it. The new 10-year cancer strategy will surely focus attention on this most deadly of all the cancers that we worry about and will help us to drive up survival rates.

The ability to spot symptoms early is always important. So are the rapid cancer diagnosis pilot programmes operating in three health board areas in Scotland, in which 12 per cent of patients have received an early cancer diagnosis, including for pancreatic cancer, which is crucial in the fight against the disease. Evaluations show that those pilots are useful way of ruling cancer out, or in, for patients who have non-specific systems. As Pancreatic Cancer UK says, that could be life-changing for patients with that cancer. Early diagnosis can save lives.

As ever, there is great work going on in the research field, with Scotland leading the way with some innovative approaches. The Glasgow cancer tests use patient biopsies to collect information that can be used to direct clinical trial treatments that are personalised to individuals. Precision Panc, which Clare Adamson mentioned today and in our debate two years ago, is led by a team at the University of Glasgow and is a collaborative endeavour that focuses on uncovering people’s molecular profiles and matching those with the most effective clinical trials for them. As part of its future leaders academy, Pancreatic Cancer UK is collaborating with the Beatson Institute for Cancer Research to fund five PhD students to work on the disease.

A piece of work being done at the Institute of Cancer Research sounds really interesting. It is called “gremlin therapy”. The idea is not easy to follow, but, apparently, the presence of the gremlin protein has been demonstrated to reverse the actions of dangerous cells in the body. There is another chemical that regulates the amount of that protein, and those two molecules work hand in hand to create something called a self-inhibitory feedback loop, which has been shown to restrict the spread of cancer to only 15 per cent of test samples. What is perhaps even more interesting is that the modelling was first predicted by none other than the computer science genius Alan Turing. There is great hope that that therapy can bear fruit.

We all know that pancreatic cancer is one of the hardest cancers to fight, but I was encouraged to read about the current work that is going on in Scotland and across the world to try to tackle it. The research is exciting, and early results are positive, so let us hope that the work ultimately makes a difference and helps to deliver the breakthrough that we need against what is one of the most dangerous cancers that we face.

I congratulate Clare Adamson on bringing the subject to the attention of the Parliament.

I congratulate Clare Adamson on securing this debate and on her excellent and compassionate opening speech. It is important that we take this opportunity not just to recognise pancreatic cancer awareness month but to strive to improve the response to a dreadful disease.

I use this debate to ensure that the voices of my constituents who have been impacted by pancreatic cancer are heard in the Parliament. My constituent Annmarie Adams and her mother Margaret have travelled through from Clydebank to support today’s debate, and I welcome them both. Annmarie’s husband Billy passed away peacefully on 17 June this year, just two months after his diagnosis. He was surrounded by his loving family, who had to cope with losing him at 55 years of age.

Billy was a born-and-bred Bankie, who worked in security and pubs in his local area. A die-hard Liverpool and Glasgow Warriors fan, he had hoped to visit his beloved Anfield before he died, but he did not get the chance. However, Annmarie and her mum visited Anfield at the start of this month to mark Billy’s 56th birthday on 8 November and to scatter some of his ashes in the River Mersey.

Annmarie feels that the general public and health professionals need to be more aware of the signs and symptoms of pancreatic cancer, to enable quicker diagnosis. Her experience has convinced her of the need for enhanced end-of-life care and support. She thinks that better communication and streamlined services are essential if we are to enable people to use the time that they have left to greatest effect. Billy’s cancer was, unfortunately, too far advanced for him to receive treatment. Annmarie wants everything to be done to prevent other families from having to face the same heartache.

I welcome another constituent: Katie Hendry, from Milngavie, who is watching online. She also wants more awareness of this terrible disease, to which she lost her grandmother Christine, who, sadly, passed away on 25 June 2021 at the age of 79. Christine left behind her husband of 57 years, Bill, her three children, her five grandchildren and two grand-dogs. Christine was a retired primary school teacher who loved singing in rock choirs—her favourite number was “Dancing Queen”, by Abba. She was a devoted grandmother and had a large network of friends. She always managed to make people feel special while they were in her company.

Christine had been back and forth to her GP, who eventually referred her to hospital for tests. She was tested for bowel cancer in December 2020, but the results came back clear. She continued to feel unwell, so, knowing that something was not quite right, she decided to go private to get a scan. The scan detected a shadow on her pancreas. Further tests were carried out and Christine was eventually diagnosed with pancreatic cancer on 26 March 2021.

Christine’s ashes were scattered in Mugdock country park and on the beach at Anstruther—places she had enjoyed visiting and where she had had happy times with her family.

Christine’s granddaughter Katie would like there to be increased funding and scanner capacity, quicker referrals from doctors, person-centred care and more clinical trials and research.

It is an honour to share my constituents’ heartbreaking experiences in the Parliament. I pay tribute to their strength and determination to highlight how important early diagnosis is to saving lives.

We know that pancreatic cancer is one of the deadliest cancers, with 900 people dying from it each year in Scotland. However, two-thirds of people in the UK cannot name a single symptom. We must do more to get the message out there about the symptoms and to ensure that pancreatic cancer gets the correct response in the new cancer strategy for Scotland.

I praise Pancreatic Cancer Action Scotland and Pancreatic Cancer UK for everything that they do to raise awareness and for their support for today’s event. The powerful testimonies of my constituents must drive us to do everything that we can to get the best possible answers when it comes to the dreadful impact of pancreatic cancer. We must show that we have listened and we must ensure that the response to pancreatic cancer gets the priority that it deserves.

I, too, thank Clare Adamson for lodging the motion today, and I am grateful for my colleagues’ important contributions.

In addition, I thank Pancreatic Cancer UK for its continued efforts in raising awareness of pancreatic cancer and supporting pancreatic cancer patients. I attended its parliamentary drop-in event a couple of weeks ago and I was delighted to see how many members from across the chamber were engaging with the event.

Today’s now annual event has been very powerful—as ever. It is always a pleasure to have the stories of the citizens of Scotland brought to life in the chamber and to have people in the public gallery for whom the debate is so meaningful. It really is the Scottish Parliament at its best. I, too, welcome the friends, families, volunteers and workers from Pancreatic Cancer UK.

At the event a couple of weeks ago, I had a chance to speak to a few of the charity’s employees and volunteers, many of whom have personal experience with pancreatic cancer. Those individual, personal stories are so impactful, and it is through those testimonies that we can identify areas where we can further improve services.

From my conversations a couple weeks ago, I heard that patient information remains an issue when a patient is diagnosed. It can be really difficult for an individual to understand all of the information that is provided while they are processing the initial diagnosis. Therefore, it is important that we provide resources for patients, not just at the beginning of their cancer diagnosis but throughout their treatment pathway.

That is why the Scottish Government is piloting 12 programmes across Scotland. The single point of contact programme sets out to ensure that all patients will have a constant point of contact throughout their cancer pathway, to whom they can continually refer back, rather than needing to make new contacts as they proceed with testing, treatment and post-treatment support. That single point of contact will ensure that patients receive timely and accurate advice on their appointments, tests and results. They will offer the opportunity to discuss the non-clinical support that is available, and help patients to self-manage some aspects of their condition.

However, not only is it crucial that patients have information throughout their pathway, it is crucial to ensure, as many members have mentioned, that there is awareness of pancreatic cancer among people who have not been diagnosed. As we all know, November is pancreatic cancer awareness month. Raising awareness of pancreatic cancer and its common symptoms—back pain, yellowing skin, indigestion, tummy pain and weight loss—is absolutely crucial in detecting that cancer early.

We know that the earlier that cancer is detected, the easier that it is to treat. This is why we continue to invest in our detect cancer early—DCE—programme, which takes a whole-systems approach to early detection and encompasses primary and secondary care, public awareness, data and screening. In 2018, an overarching DCE social marketing campaign, called “Survivors”, was developed in close consultation with the Scottish Cancer Coalition, which includes pancreatic charity representation. The campaign aimed to reduce the fear around cancer and to empower people to take early action. To coincide with the campaign, an interactive tool was developed for DCE’s website—getcheckedearly.org—to raise awareness of the early signs and symptoms of cancer, including pancreatic cancer. A new DCE awareness campaign is under development and will launch next spring. I encourage any individual who might be experiencing common symptoms of cancer to present to their GP.

As committed to in our “NHS Recovery Plan”, work is under way, through the centre for sustainable delivery’s earlier cancer diagnosis programme board, to develop a new earlier cancer diagnosis vision. That will form part of Scotland’s new cancer strategy, which is expected in spring 2023.

To date, extensive engagement has been undertaken to develop our next cancer strategy. Our consultation analysis has been published and it pulls out a number of key themes and priority areas for the Government to consider. Pancreatic cancer, as one of the less survivable cancers, has, yet again, been highlighted as an area of need. Through our national cancer plan, we have previously highlighted less survivable cancers and we have focused a number of our actions and investment in that area.

Notably, we are working with the Scottish HepatoPancreatoBiliary Network to improve pathways across pancreatic and liver cancers. We have invested £653,000 in funding that network, over two financial years, to redesign those cancer pathways. That work is aimed at improving patient outcomes and experience. As do all members, I look forward to our making the technological advances that are required—particularly in early diagnosis, because, as we have heard today, far too many people have advanced cancer at the point of diagnosis.

A number of members mentioned the Cancer Research UK report on inequalities, which was published yesterday. The Cabinet Secretary for Health and Social Care, Humza Yousaf, attended the conference at which it was launched, made a short speech and took a question-and-answer session. He also met the CRUK chief executive afterwards, to discuss the report in more detail.

We continue to tackle disparities in deprived areas by ensuring that there is equitable access to cancer services, via our national cancer plan. The new 10-year strategy, which will launch in spring next year, will take a comprehensive approach to improving patient pathways, from prevention and diagnosis through to treatment and post-treatment care.

However, whenever I discuss health inequalities—as we often do in the chamber—I am also aware that the way in which poverty impacts on health involves a level of complexity. People who live in poverty are more likely to get cancer in the first place. They are more likely to smoke and to be obese, which are the two biggest risk factors for cancer. They are more likely to have a later diagnosis. Yesterday, I heard a patient advocate speak very powerfully, on the radio—a man called Ally, who was a fireman and who, throughout his life, has worked with people from socioeconomically deprived communities. He talked about the difficulties of accessing healthcare and of being listened to.

There is a lower uptake of screening among that group. We have invested a huge programme of work in trying to ensure that people who are living in poverty take up the offers of screening. For example, if screening for cervical cancer is taken up, it can prevent cancer—screening does not just detect cancer early, but catches it before it even becomes cancer.

In reality, poverty kills. We in the Parliament are doing much to tackle poverty. However, as has been mentioned many times before, not all the levers are in our hands. We are tackling poverty through a raft of initiatives such as the Scottish child payment and promotion of the real living wage.

To sum up on health inequalities: they are complex; they relate to inequalities in wealth, status and power; and a cultural shift is required to tackle those. Again, work is going on in the Scottish NHS to ensure person-centred care, realistic medicine and shared decision making. All those things are designed to empower the people who come through our system.

The Scottish Government is clear in its commitment to improving cancer awareness. We have continued to prioritise cancer services throughout the pandemic, and will continue to do so as we recover and head into the winter. It is absolutely crucial that we continue to raise awareness of cancer symptoms—in particular, of those of the less survivable cancers such as pancreatic cancer. I thank everyone who is helping us to do so.