Meeting of the Parliament

Meeting date: Wednesday, November 13, 2019

Official Report 917KB pdf

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Pancreatic Cancer Awareness

The next item of business is a members’ business debate on motion S5M-18679, in the name of Clare Adamson, on pancreatic cancer awareness. The debate will be concluded without any question being put.

Motion debated,

That the Parliament notes that November marks Pancreatic Cancer Awareness Month and that 21 November 2019 is World Pancreatic Cancer Day; congratulates all of the pancreatic cancer charities and their supporters on working tirelessly to raise awareness of the condition; understands that it is one of the least survivable cancers and the fifth most common cause of cancer death in Scotland; notes that, while there are currently no screenings or early detection tests, some are in development; believes that early detection is vital to improving a person’s chance of survival by ensuring early access to treatment and that this need for early diagnosis makes awareness and knowledge of the condition all the more important, and welcomes all efforts in this cause.

17:05  

I thank all my colleagues who have supported the motion and allowed it to be debated in the chamber this evening.

This is the third year in which we have had a debate to mark pancreatic cancer awareness month. A number of activities will take place over the month. There will be lots of fundraisers and lots of information events. Last Thursday, we had a photo call on the garden lobby steps, which was attended by many colleagues, including the First Minister and the Cabinet Secretary for Health and Sport.

International pancreatic cancer day will take place on 21 November. I am guilty of a purple #fail this evening, unlike the supporters in the gallery, but I promise that I will wear purple on that day, in support of pancreatic cancer awareness.

On 26 November, Pancreatic Cancer Scotland’s pancan van will be outside Parliament, which will give members the opportunity to meet members of the organisation and see the awareness-raising activity that they do around the country. The van has been donated by Arnold Clark Car and Van Rental, and we are thankful that it enables Pancreatic Cancer Scotland to undertake activity across Scotland. I am sure that many members will go out to visit the van to see some of the activities that are carried out to raise awareness.

Since last year’s debate, I have had an opportunity to visit, along with people from Pancreatic Cancer UK and Kim Rowan, who is in the gallery this evening, the future leaders academy staff at the Beatson west of Scotland cancer centre in Glasgow, where we saw some of the world-leading activity that is going on in scientific research into pancreatic cancer. I am sure that the minister will want to talk about that, and that he will acknowledge that Scotland is leading in much of the research that is being done. It is important that we support that. I am sure that many members would welcome the opportunity to visit that project in the Beatson.

The work is important because pancreatic cancer remains one of the least survivable cancers. We know that cancer survival rates have barely changed in the past 50 years, which makes it a sudden and, often, devastating diagnosis for the person who is faced with that conclusion to an investigation.

Pancreatic cancer is a difficult cancer to pin down. Often, people have been treated for minor and less serious complaints, because the condition symptoms include changes in bowel movements, changes in appetite and weight loss. Indeed, in the case of my colleague Nicky’s mum, who passed away from pancreatic cancer, a referral to a diabetic clinician resulted in identification that what was wrong with her pancreas had nothing to do with diabetes but was late-stage pancreatic cancer.

It is because of such cases that so many people are so passionate about changing that outcome. We need to raise awareness of the symptoms of pancreatic cancer, so that people seek support from clinicians earlier, and so that we can develop understanding that there is hope for the future and that we can do something to turn things round.

Pancreatic cancer survivors are few and far between. The “1 per cent club” are people who have survived pancreatic cancer for more than 10 years: only 1 per cent of those who are diagnosed survive for 10 years.

There is so much that we can do to raise awareness and encourage people to come forward. We can look at what we can do as individuals and at what the Government can do to help. I record my thanks to Jeane Freeman, the Cabinet Secretary for Health and Sport.

In the gallery this evening is Lynda Murray, who is representing the Begley family. Her father died from pancreatic cancer, and she has been tenacious in examining her father’s pathway and has been considering how, if things had happened differently, her father might have been a candidate for surgery, which is one of the few available treatments for pancreatic cancer.

Lynda has worked tenaciously to get the attention of the cabinet secretary, so we were delighted when Jeane Freeman came to the cross-party group on cancer and agreed to Lynda’s asks—if I can call them that—on what we should be doing in the future. We were also pleased to note that an audit of pancreatic pathways in Scotland is now being undertaken. Jeane Freeman and Lynda Murray are working with the clinicians, and we will have a very timely follow-up meeting on that work later this month.

There will be much happening in the month. Lots of buildings will be lit up purple. I ask that, on pancreatic cancer awareness day later this month, we all try to wear people in recognition of it. There are many activities going on. I mentioned my colleague Nicky earlier: I will be attending a prosecco and cake evening at her house to raise money for pancreatic cancer. I see Christina McKelvie is looking very interested in that. I am sure that we can extend an invitation.

Lots of football clubs will be wearing purple, and people are going out and supporting efforts on pancreatic cancer at many of the usual types of fundraising events. Tunnock’s has gifted PCS a limited edition of its famous tea cakes wrapped in purple foil to celebrate pancreatic cancer awareness month.

One of the patrons of Pancreatic Cancer Scotland, who will certainly be well known to many of the ladies in the chamber, is the Orkney jewellery designer Sheila Fleet, who has created a limited edition enamel necklace that is being sold in support of efforts on pancreatic cancer this month. I hope that my husband is watching the debate.

The month is an important remembrance of those who have passed away. Pancreatic cancer is very difficult. Families often get behind fundraising efforts for survivable cancers, and we have seen how that can transform outcomes for people: we might, for example, consider how much has changed with breast cancer. Usually, however, pancreatic cancer is such a short, sharp shock that it is over almost before it has happened to a family.

Last year we heard a very moving tribute from my colleague John Scott. He talked about his wife, who died from pancreatic cancer at the age of 49. He gave a very warm tribute to her in that debate, and our thoughts are with John today.

We can make a difference. The five-year survival rate is only 5.6 per cent. Such are the statistics that we have to reverse—I hope—in the years to come, when I hope we will be talking about successes and about making inroads into tackling pancreatic cancer.

17:14  

I start by congratulating Clare Adamson on securing today’s debate and I commend her for her consistent campaigning on pancreatic cancer. It is an important issue that I know she is passionate about and has been campaigning on for many years. I thank her, too, for her comments about my colleague John Scott. I also thank and pay tribute to Pancreatic Cancer UK, Pancreatic Cancer Scotland and Macmillan Cancer Support for the comprehensive and useful briefings that they provided to members ahead of this debate.

As Clare Adamson outlined, there are some very stark statistics around pancreatic cancer that we as a country need to turn around. It is the deadliest common cancer in Scotland, with a five-year survival rate of only 5.6 per cent, compared to that of 69 per cent for more survivable cancers. Less than a fifth of people are diagnosed at an early stage and less than 10 per cent of people with pancreatic cancer go on to receive surgery, which is the only curative treatment that can save lives. Despite being only the 12th most common cancer in Scotland, pancreatic cancer is responsible for the sixth highest number of cancer deaths.

I very much agree with what Clare Adamson said with regard to the charities working in this area to increase public awareness of the symptoms of pancreatic cancer, which must be a top priority. A national strategy and campaign to raise awareness, as part of a broader national plan for pancreatic cancer, is rightly a key ask of Pancreatic Cancer UK and it could replicate the most successful elements of the detect cancer early programme’s public campaigns for breast, lung and colorectal cancers, which have had real success in Scotland. All those campaigns have made a significant difference.

Pancreatic cancer is a difficult cancer to detect early, so anything that can increase early detection and diagnosis must be welcome. Given that the causes of pancreatic cancer are little understood, it is vital that we work to take forward more research into it. It is very encouraging that so much world-leading research is taking place here in Scotland—we should celebrate that—not least through the precision panc programme based in Glasgow and the future leaders academy that Clare Adamson highlighted. Like her, I have had the opportunity to visit the academy in the Beatson. I did so last year and met some of the inspirational young leaders who are striving to make the discoveries that can transform the diagnosis and treatment of pancreatic cancer now and in the future.

Currently, though, pancreatic cancer receives only 2 per cent of national cancer research funding. Clearly, that position has to change. I agree with Pancreatic Cancer UK and the Scottish Government about how we must take forward development of specific initiatives to incentivise targeted research into pancreatic cancer across our research and clinical communities. It is clear that that work is already being taken forward. I note that on world cancer research day, the University of Glasgow sent all MSPs its newsletter that specifically highlighted the need to get the treatment of pancreatic cancer to patients at the right time. There is often a very short window of opportunity to achieve that. I back the calls by Macmillan Cancer Support for recognising the crucial necessity of growing and developing our cancer workforce if we are to meet the ambition of providing tailored support to all cancer patients by 2023.

I pay tribute to all those volunteers, some of whom have joined us this evening in the public gallery, for the work that they do for pancreatic cancer charities across the country to raise both awareness and vital funds. My constituent Kim Rowan, who lost her grandmother to pancreatic cancer, continues to make a massive contribution with her campaigning efforts and involvement in our Parliament’s cross-party group on cancer. I give a special mention to Kim’s 13-year-old nephew, Jack Morris, who is taking part in Pancreatic Cancer UK’s challenge of running 24 miles in 24 days in honour of his relatives who have, sadly, died of pancreatic cancer. I hope that he raises lots of money in his challenge and I wish him every success in helping take forward support for that worthy cause.

Again, I welcome this debate and recognise the widespread cross-party support that exists for transforming pancreatic cancer diagnosis and treatment in Scotland. There is clearly a need for real progress and I hope that the Scottish Government and Parliament can ensure that we continue to work to put in place the right plans to move things forward so that more Scots can survive pancreatic cancer.

17:19  

I thank Clare Adamson for securing a debate during pancreatic cancer awareness month for the third consecutive year, and for her continued efforts to highlight the need for the earlier diagnosis of and treatment for pancreatic cancer. I also thank Cancer Research UK, Pancreatic Cancer UK and Pancreatic Cancer Scotland for the work that they do and their continued efforts to raise awareness.

I am keen to contribute to the debate. I raised the issue of pancreatic cancer in Parliament as far back as 2012. Pancreatic cancer has impacted my family, as my mother succumbed to the disease in 1985. Our lived experience has made us acutely aware of the need to keep researching to fight the disease. By speaking in today’s debate, I want to raise the profile of pancreatic cancer, particularly by drawing attention to its symptoms, in the hope that early awareness of the symptoms will lead to earlier diagnosis.

Pancreatic Cancer UK’s briefing for the debate said that two thirds of people in the United Kingdom cannot name any pancreatic cancer symptoms. As early diagnosis is crucial, that needs to change, so it is worth stating them. However, please remember that it is not a certainty by any means that having the symptoms means a pancreatic cancer diagnosis.

The first noticeable symptoms can be pain in the back or stomach area, which might come and go at first and which is often worse when one lies down or after one has eaten. Others include unexpected and unexplained weight loss; indigestion and changes to bowel habits, as Clare Adamson mentioned; loss of appetite; and jaundice. The most obvious sign of jaundice is yellowing of the skin and the whites of the eyes, but it also turns urine dark yellow or orange. Other symptoms include feeling or being sick, having difficulty swallowing and being recently diagnosed with diabetes, since pancreatic cancer destroys the cells that produce insulin.

As I said, please remember that it is by no means certain that a person with those symptoms has the disease, but being aware of the symptoms should help earlier identification and, I hope, earlier and successful treatment.

I support a dedicated awareness campaign on pancreatic cancer, as the briefings for the debate reinforce that the mortality of this particular cancer is exacerbated because of late detection. I also support the continuing research into developing screening and early detection tests. It is vital that that work receives the support and funds that it needs. I am encouraged that Scotland is leading the way in the UK in research into pancreatic cancer, via the precision panc programme and the future leaders academy at the Beatson.

We all hope that the research in Scotland and around the world will lead to a method to diagnose pancreatic cancer earlier. If members were in the chamber for the earlier debate on the power of modern and new computers to help us in the field of medical research, I am sure that they will agree that applying technology and research to fighting pancreatic cancer is a worthy cause and a priority.

I thank Clare Adamson again for bringing the issue to the attention of the Parliament and I look forward to hearing the rest of the speeches. I send my best wishes to John Scott, for whom I have the highest regard.

17:23  

I congratulate Clare Adamson on securing this evening’s important debate and on the quality of her opening speech.

No cancer is a better cancer to have, but pancreatic cancer is one of the least survivable. As other members have made clear, early detection is absolutely vital to improve a person’s chance of survival. People need to be better informed, so it is important that we use tonight’s debate, and world pancreatic cancer day next week, to raise awareness.

With little improvement in survival rates over the past 50 years, Pancreatic Cancer Scotland has set out a vision for the 2020s to be the decade of change, which I strongly support. While death rates for many other cancers are declining, death rates are increasing for pancreatic cancer. With around 800 new diagnoses for pancreatic cancer every year in Scotland, the outlook is not good, so it is absolutely vital that we work together on that. Of course, behind every number, statistic and survival rate, there are stories—as we heard from Willie Coffey and other members—of mothers, fathers, sisters, brothers, aunts, uncles, grandparents and friends.

As we heard, the pancreas is found behind the stomach and in front of the spine. It produces digestive enzymes that help the body to use and store energy and also regulates blood sugar levels. The common symptoms of cancer of the pancreas are poorly understood and are often mistaken and diagnosed as less serious health concerns.

Awareness of the symptoms can help with early diagnosis, because people are more likely to make an appointment with their general practitioner and get a correct diagnosis. If a patient is diagnosed early enough to have surgery, their chance of five-year survival increases from 7 per cent to almost 30 per cent, so knowing the symptoms and risk factors can save lives.

I thank Pancreatic Cancer Scotland for its excellent briefing, from which I learned of the pan can clan, the community of people across the country who are aware of or affected by pancreatic cancer and are all dedicated to the cause of raising awareness and funds. I welcome those of them who are in the public gallery today.

Members of the pan can clan have organised for landmarks across the country to be lit up in purple for November. They hope that it will not only raise awareness of the disease but give people a focal point to remember a loved one who was lost to pancreatic cancer, or to celebrate the life of a survivor. I thank all the people who are involved in that lighting up, including of Ness bridge in my city of Inverness.

At the moment, excellent research into treatment is being carried out, including the work of one team at Glasgow university. That is mostly funded by Cancer Research UK, which has classed pancreatic cancer as an “unmet need”. The research has the potential to be transformational for the way that patients are treated.

The charity Pancreatic Cancer Scotland was formed by a group of patients, carers, nurses and doctors across Scotland

“to share hope, knowledge and action in the battle against pancreatic cancer”.

Ever since, its collaborative approach with the wider national health service, third sector groups and the Scottish Government has been at the core of its work. I congratulate the charity on its tireless work to raise awareness, funds and hope against the disease.

Again, I congratulate Clare Adamson on securing this evening’s debate.

17:27  

I welcome this debate and I am grateful to Clare Adamson for bringing it to Parliament. She is a champion for all those who are affected by the disease. I also extend my sincere thanks to my constituents who have shared their experiences of pancreatic cancer with me and to those organisations that have provided us with briefings for this evening’s debate.

As we have heard from colleagues, pancreatic cancer has the lowest survival rate of any cancer. It spreads rapidly and is difficult to diagnose and hard to treat. Symptoms are vague and often do not form a coherent picture of one identifiable illness or condition. Around half of pancreatic cancer patients visit their GPs with their symptoms three times before being referred to hospital, and 16 per cent visit their GP seven times or more before receiving the correct diagnosis. As we have heard, unlike with other cancers, there has been little improvement in survival rates. Pancreatic Cancer UK is clear that if that is to improve, a screening programme or early detection test must be developed. Research into that is being conducted but, until a test is available, knowing the symptoms and risks is vital for early diagnosis and a better chance of survival.

Research shows that patients who are diagnosed in time for surgery are more likely to live for five years and beyond. A survey by Pancreatic Cancer Action in July 2019 found that, as we heard, 73 per cent of Scottish residents cannot name one symptom of pancreatic cancer. We must arm people with that knowledge, so that they do not dismiss apparently random symptoms. There has been no national public campaign for pancreatic cancer symptoms, although, through the detect cancer early programme, there have been public campaigns for breast, lung and colorectal cancers. That must be rectified.

In responding, will the minister tell us whether the Scottish Government will develop a national campaign for raising public awareness of pancreatic cancer, with a focus on prevention and early detection?

Any information campaign must take into account the impact of health inequalities on detection and survival rates. While diagnosis is dependent on patients returning to their local surgery time and again, inevitably, some of the most vulnerable in society will suffer. Last month, it was revealed that the most deprived areas have cancer incidence rates that are 32 per cent higher than those in the least deprived areas and that mortality rates are 74 per cent higher in the most deprived areas compared with those in the least deprived areas. It is often the most vulnerable people who are least likely to visit their GP surgery when they start showing symptoms. That must be reflected in any awareness-raising activity. How can we reach those people who most need to make that initial appointment?

Awareness of the risks is crucial, but it is equally important that we celebrate the great work that is taking place. One of my constituents, whose life has been impacted by pancreatic cancer, has set up a Facebook group called team Scotland pancreatic cancer and is organising the first support group for everyone who has been affected. Also, Pancreatic Cancer Scotland has formed the pan can clan as a means of developing a community committed to fundraising and raising awareness of pancreatic cancer, in which people can share their stories and feel supported. It is so important that people realise that they are not on their own, that there are others who are experiencing the same difficult journey and that there is support out there and people to talk to. Those efforts to support people with pancreatic cancer and their loved ones at what might be a frightening and confusing time are laudable and we should make every effort that we can to highlight and promote them.

I will share my constituent’s words with members. She told me:

“I lost two members of my family to pancreatic cancer—my great uncle in his 70s and then, over twenty years later, my nana was given the same diagnosis. Nothing had changed over those years.”

She cited the lack of follow-up care that her nana and great uncle received because they had been given, in her words, “a death sentence”. The statistics may be disheartening, but we should take care to avoid adopting a fatalistic attitude. Awareness raising must focus on early detection of symptoms to give people the best chance of survival. We do not want to frighten people; we want to encourage them to seek help. My constituent has campaigned for a pancreatic cancer diagnosis to be treated as a medical emergency rather than a death sentence.

I invite Graeme Dey to respond to the debate.

17:31  

I begin, as Miles Briggs and Willie Coffey did, by thanking Clare Adamson not only for bringing the debate to the chamber but for being the campaigning voice for pancreatic cancer that she has been.

I also take the opportunity to thank all the staff and volunteers who work tirelessly across NHS Scotland and the pancreatic cancer charity sector not only to raise awareness and funds but to provide support to the people who need it most. A good recent example is Pancreatic Cancer Scotland launching the pan can clan—I am glad that I managed to get that out—which aims to bring together people to support the vision of making the 2020s the decade of change for pancreatic cancer. Their unending commitment, like that of others, is invaluable in responding to the disease.

A cancer diagnosis is never easy, least so when the diagnosis is as pernicious as pancreatic cancer so often is. The survival rates for pancreatic cancer are very low, as we have heard, due to it being very difficult to detect in its early stages. Of the 800 people diagnosed in Scotland every year, one in four passes away within a month—a very sobering statistic. It often has very few or, indeed, no detectable symptoms. That is why we must keep up all research to find ways to detect it far earlier and improve survival chances.

As difficult as that is, the Scottish Government is not shying away from the challenge. Our £41 million detect cancer early programme aims to increase the proportion of Scots diagnosed in the earliest stage by 25 per cent. In September 2018, the programme launched a new social marketing campaign, “Survivors”, to reduce the fear of cancer and remind people of the importance of acting early. The campaign was on air again in September this year and we hope that it will encourage people to see their GPs earlier, as previous campaigns have been so successful in doing.

To pick up on one of Alison Johnstone’s points, working with third sector partners we are also helping to raise awareness of new referral guidelines, which include updated guidance for pancreatic cancer to ensure that GPs have the best advice on how to refer patients in that situation. That activity reflects some of the key aims of the less survivable cancer task force, which seeks to double the survival rate of the six least survivable cancers, which of course include pancreatic cancer. I understand that Government officials are due to meet the task force on 18 November to discuss how the Scottish Government may collaborate further with it. That is very much work in progress and a priority.

In our programme for government we committed to supporting boards with education sessions for staff to improve monitoring of patients with suspected cancer and to ensure that such cases are escalated effectively when required. We are also supporting work to help GPs to have direct access to key tests for their patients.

The Scottish Government is determined to ensure that our pancreatic cancer services are the best they can be, and to achieve that it is vital to understand the first-hand experiences of patients and their families. For example, earlier this year, the Cabinet Secretary for Health and Sport met Lynda Murray, Pancreatic Cancer UK, Pancreatic Cancer Scotland and Clare Adamson to explore what we can do better. As Clare Adamson mentioned, Lynda, who is in the public gallery, became a champion for reform of pancreatic cancer services in Scotland following the unfortunate and untimely passing of her father, William Begley, who lost his battle with pancreatic cancer just 14 weeks after being diagnosed. Lynda’s response to that has been to become a driving force for change in our national services. I know that the cabinet secretary is looking forward to meeting Lynda and her colleagues again next week. In the meantime, as Clare Adamson also highlighted, clinical colleagues, who are supported by the Scottish Government, have been conducting an audit of pancreatic cancer services. I understand that several good suggestions for service improvements have emerged and will be explored at that meeting.

As I have already mentioned, pancreatic cancer is very difficult to diagnose at an early stage, so we must do more to prevent the disease where possible. One way to do that is to arrest our rates of obesity. One of the biggest public health challenges in Scotland is the fact that two thirds of our adults are now overweight or obese. The health implications of that, coupled with its economic consequences, make it a top priority for the Scottish Government.

I am sure that my colleagues in the chamber are familiar with the Scottish Government’s diet and healthy weight delivery plan, which sets out a vision for everyone in Scotland to eat well. Its key ambitions include halving childhood obesity by 2030 and significantly reducing diet-related health inequalities. The plan has more than 60 broad-ranging actions to make it easier for people to make healthier choices. Since its publication, good progress has been made on a number of fronts, but more is to come—most notably, to restrict the promotion of targeted foods that are high in fat, sugar or salt and have little or no nutritional value, on which we aim to introduce a bill by the end of the current parliamentary session.

As I have also mentioned, research is a vital weapon in the fight against pancreatic cancer. Of the projects that are under way, one of the most exciting is precision panc, which was seed funded by the Scottish Government and enrols patients’ clinical and biological information on its master protocol, to be identified, extracted, anonymised and presented in a timeframe that is relevant for use in clinical trials, which means that more patients can access the best available treatments. Scotland has ambitious targets for precision oncology. Thanks to precision panc, I am pleased to say that Glasgow’s precision oncology laboratory is now recognised internationally as a centre of excellence in DNA sequencing.

We are excited by the progress that we are making, but we need to stay grounded. Very little progress has been made in improving the prevention, detection and survivability of a number of other cancers, which, like pancreatic cancer, must not be left behind. About 50 per cent of all cancer deaths can be attributed to just six types, including pancreatic cancer. Like many members, I have seen friends die as a result of a number of those. Improving outcomes for those six cancers would be no small feat, but I think that we are all committed to working as partners to tackle them and are united in wanting to see more people surviving a pancreatic cancer diagnosis. Although I have just highlighted some bold steps that the Scottish Government has taken to address those public health concerns, it would be remiss of me to pretend that there is not still a very long way to go. However, by engaging more with the third sector and continuing to take advice from those who are affected by the disease, we are moving away from the one-size-fits-all approach to cancer, towards something more bespoke that aims to put the patient at the heart of decisions that are made.

I would like to finish by echoing other members’ good wishes to our friend and colleague John Scott. I spoke to him yesterday and can advise members that he was in typically mischievous form and anxious to hear updates on events here. Like everyone else in the Parliament, I very much look forward to welcoming John back here next year.

Meeting closed at 17:39.