The final item of business is a members’ business debate on motion S4M-12968, in the name of Patricia Ferguson, on Barrett’s oesophagus. The debate will be concluded without any question being put.
Motion debated,
That the Parliament understands that the incidence of oesophageal adenocarcinoma in Scotland has doubled in the last 10 years; further understands that Scotland has the unenviable distinction of being the country with the most cases; believes that early detection improves prognosis and survival rates; considers that it is vital that, in Glasgow Maryhill and Springburn and across Scotland, awareness of this type of cancer is raised in tandem with awareness of Barrett’s oesophagus, which is a treatable precancerous condition; believes that, if it is dealt with correctly, oesophageal cancer can then be prevented from developing; notes that the NHS in England records Barrett’s oesophagus as a quality performance indicator (QPI) to allow diagnostic progress to be monitored, and notes the view that a QPI should be established in Scotland.
18:53
I thank members across the chamber who have supported the motion that we are debating this evening.
I want to speak about the experiences of two men that I hope will help to highlight why this short debate is so important. A few years ago, a friend of mine, Dave Scott, who then worked with my husband, former MSP Bill Butler, became ill. Dave did not talk much about it, but it was obvious that something was seriously wrong. Over what seemed like a very short period of time, Dave lost weight—a lot of weight. He lost half of his body weight and seemed literally to be wasting away. Through most of that time, Dave continued to work, so the change was obvious to us all.
The worst thing was that Dave did not know what was wrong. He could not swallow properly, he could not sleep and he had bouts of heartburn, but he was treated for back pain and stress. Eventually, after a year, he was diagnosed with a condition called Barrett’s oesophagus. I must admit that I had never heard of it and Dave, being a typical young man, did not dwell on it or talk about it much. However, it took 16 months of procedures and recuperation to get Dave back to normal. He is well, as members will know, and he has learned to live with his condition, but it is something that has to be regularly monitored.
Some months after hearing about Dave Scott’s diagnosis, I accidentally tuned into a Radio 4 programme about Barrett’s oesophagus. Remembering that this was the condition that Dave had suffered, I continued to listen to the programme. It was only then that I fully understood the nature of the condition that he had had and the fact that it could be a precursor to oesophageal cancer. The radio programme focused on the fact that people with regular problems with reflux or indigestion had a higher disposition to Barrett’s and that 30 per cent of those with Barrett’s in the United Kingdom go on to develop cancer if no intervention takes place.
Earlier this year, I was contacted by a constituent, Mr Daniel McGrory, who had himself suffered from oesophageal cancer and wanted to raise awareness of it, particularly its growing incidence. Above all—and most crucially—he wanted to highlight the lack of awareness of the fact that Barrett’s oesophagus can be a warning or sign of more serious problems ahead. It is because of Mr McGrory and Dave Scott that we are debating this motion, and I welcome to the chamber the two of them and two of Mr McGrory’s friends, who, like him, have suffered this particular cancer.
Adenocarcinoma of the oesophagus has increased globally, but particularly in the UK. In Scotland, it has doubled in the past 10 years and now has an incidence rate—
Will the member give way?
I am happy to.
I thank Patricia Ferguson for bringing the motion to the chamber, but I note that Public Health and Intelligence has confirmed that over the past 10 years world age-standardised incidence rates of oesophageal adenocarcinoma have increased from 4.1 per 100,000 to 4.4 per 100,000. The figure has not really doubled in the past 10 years.
It is very interesting that the minister should say that, because I would challenge her figure. My understanding is that the incidence is now 16.9 per 100,000 and clinicians have told me that it is the fifth most common cancer in Scotland and the third most common cause of cancer deaths. Scotland now has the unenviable record of being the global leader for incidence of the disease.
When Mr McGrory first had difficulty swallowing, he thought little of it and delayed going to his GP for four months because his symptoms at first seemed relatively minor. He was lucky; with the skill of his surgeon, major surgery and chemotherapy, he has made very good progress. Like most cancers, adenocarcinoma is best treated early; more important, it has a recognisable precursor—Barrett’s oesophagus. However, according to the charity Ochre, many people with this particular cancer are diagnosed too late for effective intervention.
Barrett’s is the type of condition that creeps up on people. General practitioners often struggle to spot the warning signs, and over-the-counter indigestion tablets mask the symptoms. In Dave Scott’s case, the patient was in good faith prescribed Ibuprofen for what both he and his doctor thought was a muscular problem. However, the reality is that Ibuprofen can aggravate Barrett’s, making the prognosis more difficult.
What do I want to achieve from this debate? I want to ask the minister to consider three things. Whether we agree on the statistics, I believe that we should make Barrett’s—or if not Barrett’s, then high-grade dysplasia—a condition that merits consideration as a quality performance indicator in the health service. I would also like to see a campaign to raise awareness of Barrett’s and the fact that heartburn can be a sign of more serious problems, which is something that I am sure most people do not appreciate. Finally, I hope that the Scottish Government can alert those who sell over-the-counter remedies to the issue and suggest that, as with headache tablets, they recommend to people who are buying more than one packet of an indigestion remedy that they consult their GP.
If Scotland has the unenviable reputation of leading in the incidence of these conditions, we should also lead the way in the campaign against them. There is no doubt that people are dying needlessly just because they do not know the signs of oesophageal cancer. Diagnosing Barrett’s oesophagus can prevent oesophageal cancer from developing, as well as avoiding the need for major invasive surgery at great cost to the national health service and with great disruption to the lives of people and their families.
I have made three straightforward requests of the minister in this debate. I hope that she will consider those in her response, and that she will agree that the time has come for Scotland to act on these conditions.
19:00
I thank the Presiding Officer for letting me speak first, and I apologise to members for having to leave afterwards.
I congratulate Patricia Ferguson on bringing to the chamber a debate on such an important area of medicine. It is not straightforward—in fact, it is a difficult area, and there has been much debate about Barrett’s oesophagus over many years. Some gastroenterologists are still sceptical about the value of having GPs refer patients with persistent heartburn for endoscopy, partly because the risks of Barrett’s oesophagus have previously been regarded as low.
The risks are low when there is no dysplasia—alteration of the cells—present. However, the trouble is that one does not know until the endoscopy or biopsy has been done what the situation is. It may require an indefinite follow-up, as there may be something that the doctors are not sure about. There may be very mild dysplasia, or no dysplasia at all: just the presence of Barrett’s oesophagus. When low-grade dysplasia is present, there is a significant increase in risk, with a 5.3 per cent risk of oesophageal cancer developing within one to eight years. With high-grade dysplasia, there is a 50 per cent of adenocarcinoma developing in one to eight years.
I declare a personal interest in the debate, as it concerns the cancer from which I suffered. I did not suffer from Barrett’s oesophagus—it was just straightforward oesophageal cancer. I was very lucky.
First, having been a doctor, I was aware of the fact that one should not have difficulty in swallowing, even at my age, and even if one eats rapidly, as I always did as a junior doctor, which unfortunately led me to learn very bad habits. Difficulty in swallowing is not something that one should experience, and we should send a clear message, and carry out a great deal of public education, about the fact that, if someone experiences difficulty in swallowing on more than one occasion, they should consult their doctor. They would, one hopes, then be lucky enough to have that recognised by their GP as a cardinal symptom requiring immediate referral.
I was seen within a week; I was diagnosed with an endoscopy after one week; and I was then subjected to six weeks of tests before I could enter treatment. Once one enters treatment for oesophageal cancer, tests are undertaken to see that there has been no spread, either local or distant, and no seeding into the abdomen. The doctor also wants to know how far through the thickness of the gullet—the food pipe—the cancer has spread. Only once someone has passed those five tests will they be subject to pre-operative chemotherapy, major surgery—as I was—and post-operative chemotherapy, none of which is a particularly pleasant experience. Nevertheless, it means that those who go through that treatment, because they have passed all the tests, have a much higher survival rate.
Overall, however, because of late diagnosis, and because we are not following up people with Barrett’s oesophagus appropriately, nor tackling people with chronic heartburn to diagnose Barrett’s, the five-year survival rate for oesophageal cancer is only 15 per cent. The rate compares roughly to that for lung cancer, being among the worst survival rates for cancer. Breast cancer, on the other hand, now has a 90 per cent plus survival rate, because we have tackled it and are dealing with it extremely well.
I agree strongly with Patricia Ferguson that we need more publicity for these conditions. We need to ensure, given the immense pressure on endoscopy service, that we have an adequate number of endoscopists.
I will finish on this note. In 1990, I went to the States because I was doing a giant research project with the Mayo Clinic, and I was fortunate to see some of the work that it was doing. It did not restrict endoscopy to trained doctors and gastroenterologists. It had trained technical nurses who did the endoscopies. We need that in this country. We have it in some places. In that regard, I mention Dr Gordon Birnie in Fife. When I came back, I suggested to the health boards in Fife and Forth Valley that they take up that practice. Forth Valley declined, but Fife took it up, and it has a series of nurse endoscopists.
I am sure that the minister will tell us that an endoscopy service is run in Fife that gives its services out to other boards, but all boards should have technical endoscopists. We will need many more of them if the problem is to be tackled. I thank Patricia Ferguson again for giving me the opportunity to discuss the issue, and I apologise for my early departure.
19:05
I congratulate Patricia Ferguson on securing this evening’s debate and for drawing attention to the condition. I had heard of it, but that was as far as it went. I knew that it existed, but beyond that I could not have told people anything else.
I found the information in the 2014 booklet that the Barrett’s Oesophagus Campaign made available to members before the debate enlightening, but also challenging in public health terms.
I had no idea until earlier today that Dave Scott suffers from Barrett’s oesophagus. I welcome him to the chamber. It is good to see him, and good to see him looking well. I do not know Mr McGrory, but I hope that things are going well for him as well. I am grateful to them for lending their weight to drawing attention to the situation, and I commend them both for doing so.
To think that suffering from persistent heartburn could be a sign of something far more sinister lurking in terms of health is worrying indeed. I am not sure whether I would have thought that anything was untoward if I was getting persistent heartburn. I suspect that a lot of men of a certain age, particularly in west central Scotland, would just shrug it off, thinking that it is a lifestyle choice issue and the result of having one curry too many or too much of a night out the night before. [Interruption.] I see Hanzala Malik responding to that in relation to his lifestyle.
Please don’t blame the curries for that. Thank you.
I say to Mr Malik that I have not had my dinner yet, so I thank him for mentioning curries. The serious point is that a lot of us will just shrug it off and think that there is nothing untoward. We have had a bit of levity, but the serious point that we all want to make is that people should not shrug off the symptoms or ignore the signs.
It can reasonably be agreed that, given that Barrett’s oesophagus is a pre-cancerous condition, its early detection and diagnosis fit in well with the Scottish Government’s detect cancer early initiatives and strategies, which have been highly successful. I want to illustrate briefly some of those successes in order to make a more general point. With the detect cancer early initiative, which is backed up with £30 million of Government funding, nearly 25 per cent of breast, bowel and lung cancers in 2012-13 were detected at the very earliest opportunity, enabling action to be taken and the best survival and full recovery rates where possible. That is vital.
I do not know where the early detection of Barrett’s oesophagus fits into all of that. I do not know whether the detect cancer early initiative fits into the strategy on that. I merely put on the record that, given some of the information that we have today, there could be clever ways of having a strategy that picks up some of that and the public funding that already exists. Public funding is under pressure, so we have to prioritise, and I genuinely do not know whether Barrett’s oesophagus is the right priority for the detect cancer early initiative, but surely we should at least check to see whether it is.
Likewise, I do not know whether a quality performance indicator on Barrett’s oesophagus would drive change. It might. The motion does not say that it would, but it says that we should consider it. Of course we should consider it, but the important thing is to find the best way to get the outcomes that we all want. If there are five different options, we should test each of them and work out what the best option is to drive the change that we all want.
The final thing that I would like to say is about getting the message out there. We have talked about increasing the availability of information and awareness, and I think that the community pharmacies might have a significant role to play in that when people with minor injuries and ailments pitch up at the chemist’s asking for something for heartburn. It is about getting the key information to the key professionals at key times, as the people who suffer from the condition are more likely to listen to and interact with them.
I know that I am stretching your patience, Presiding Officer, but the final final thing that I want to say is that there might be a health inequality issue if the condition befalls men more than women—I have no idea whether that is the case—or people of certain ages. We need the data and the information to decide the best way to target resources.
I thank Patricia Ferguson for bringing the matter for debate in the Parliament, and I am keen to work collegiately across the parties to see whether we can drive change in this area.
19:10
I, too, thank Patricia Ferguson for lodging the motion and for bringing the subject to the chamber this evening.
Having spent some years doing fact-finding research mainly in gynaecological cancers, I am aware of the increasing incidence of many cancers, but I was not aware of the prevalence of oesophageal adenocarcinoma and the growing number of people suffering from it in Scotland, nor of the fact that we are the country with the most cases of it. Indeed, at the time when I was working, that increased incidence was not foreseen.
In general, the number of people who are diagnosed with one or another form of cancer is rising year after year in the UK. That can in part be explained by an ever-aging population and increased life expectancy, but that is not the only cause of the greater number of people who are being diagnosed with this unwelcome and life-threatening illness.
When we look at the specific case of the pre-cancerous condition Barrett’s oesophagus, we learn that a combination of factors is thought to increase susceptibility to the condition and the ensuing oesophageal cancer. Those factors include smoking, poor diet, physical inactivity, obesity, excessive alcohol drinking and eating spicy foods. However, that cannot be the whole story, because I know several people who have undergone treatment for oesophageal cancer—some successfully and some not—whose lifestyles have included none of those contributory factors. Barrett’s oesophagus need not inevitably lead to oesophageal cancer. As the motion states, we need to ensure that it is diagnosed early so that it does not progress to full-blown cancer.
In preparing for the debate, I came across a very moving account of a young lady who was aged only 19 and was one of the youngest people in the UK to be diagnosed with Barrett’s oesophagus. Her story started in February 2010, when she sat down as normal for her breakfast cereal but found it incredibly painful to swallow. Afterwards, she found it increasingly difficult to eat and her weight dropped from 13 stone to 7 stone. She was told by her GP that she was either anorexic or bulimic, but neither diagnosis was correct. Her GP recommended counselling, but it was only after she woke one morning gasping for air and was rushed to the accident and emergency department that she was finally told that she had Barrett’s oesophagus.
That was two years after she experienced the first symptoms, by which time a large, cancerous tumour was blocking her oesophagus. She then had to go through a prolonged period of chemotherapy. Thankfully, she has now fully recovered, but I go back to my initial point that early diagnosis and detection must be a priority when we are dealing with the condition. We therefore need a better understanding of Barrett’s oesophagus and must train those in the medical profession to recognise that it can be life threatening if it is not discovered early.
Heartburn is a common symptom that is usually ignored by us or treated with antacids or other remedies that are readily available from local pharmacies. However, the charity Ochre, which exists to promote awareness of oesophageal cancer, stresses that people should understand that heartburn is not okay—certainly, when it occurs frequently—and that they should find out what is causing it by making a doctor’s appointment, not a trip to the chemist.
Ochre is working with partners across the UK and Ireland to take action against heartburn, and it has agreed to fund specialist research at Queen’s University Belfast to look at biomarkers associated with oesophageal cancer risk and at early diagnosis using data from the UK Biobank. It is hoped that that will lead to a better understanding of the causes of the cancer.
In members’ business debates, we tend not to be critical of different parties or of the Scottish Government. However, the replies that were given by Nicola Sturgeon, when she was health secretary, to five questions regarding Barrett’s oesophagus were less than satisfactory. There is no central information about the number of people in Scotland who have the condition, and there has been no specific action plan to raise awareness of Barrett’s oesophagus among the general public. Perhaps the minister could address those points in responding to this evening’s important debate. There is clearly a need to know the incidence of Barrett’s oesophagus in Scotland and to follow up those who have it so that an early diagnosis can be made if it appears to be leading to the development of a malignancy.
Once again, I thank Patricia Ferguson for lodging the motion.
19:14
I congratulate Patricia Ferguson on bringing this issue to the attention of Parliament and on highlighting the issue of oesophageal cancer in Scotland—a condition for which mortality is higher in Scotland than in the other nations of the UK—and the relationship between Barrett’s oesophagus and the development of some oesophageal cancers in some patients.
Only two weeks ago I highlighted the plight of my constituent Brian Houliston, who suffers from oesophageal cancer and secondary liver cancer. At that time, he had been refused national health service treatment for selective internal radiation therapy, the second part of a treatment recommended to him by a Harley Street specialist, which can be accessed in England and Wales, where trials of a combined course of a specialist chemotherapy and SIRT are being researched.
The good news in Brian’s case is that the Saturday after his case was raised in Parliament he received a letter advising him that NHS Dumfries and Galloway had considered his appeal and agreed to fund his SIRT, as long as it was administered as part of the trials being undertaken in England, contributing to research on the development of these cancers. I was delighted to receive a copy of the letter from Brian and his wife Sheona, and I wish him all the best in his treatment.
One of the important things that Brian told me when he came over to Holyrood to hear my question to the Cabinet Secretary for Health, Wellbeing and Sport was that he did not have any symptoms with his oesophageal cancer and it was the secondary cancer that had alerted him to a health problem.
The success in Brian’s case shows that we sometimes do achieve success in here. I think maybe we all sometimes wonder whether we are really doing anything, but there are also times when we feel that we achieve some success for our constituents. In Brian’s case, I know that the treatment will probably not save his life, but it will probably mean that he has a bit more time with his family, which is important.
Oesophageal cancer can be asymptomatic until it has seriously progressed and is possibly untreatable, which is why the recognition of the connection of some oesophageal cancers with the condition Barrett’s oesophagus is so important.
Until Patricia Ferguson lodged the motion, I was unaware of the condition Barrett’s oesophagus, where, as she has advised us, there is a change to the cells in the affected area of the oesophagus, which can be caused by things like heartburn.
I was well aware that there is a link between gastro-oesophageal reflux disease and oesophageal cancer, because I have suffered from GORD from a long time and I had looked it up. In my case, there is a genetic component, because my children also have a tendency towards it. I have to say that three pregnancies in five years, getting older and fatter and the sort of lifestyle that we have in here, where we eat while working and at a huge rate of knots, made it considerably worse. However, I have never attended a GP about it—I just live off Gaviscon and other such things.
Two of my children were less scared and went to see their doctor, and they were prescribed Omeprazole. My daughter says that it makes her feel as if she has flu, so she does not take it. My children were a bit braver than I am.
One of the interesting things is that, when I eventually decided that being the same weight as I was when I was nine months pregnant was a bit shocking and went on a diet, I found that the gastro-oesophageal reflux disease got a bit better. I do not know whether that was because of loss of weight or whether it was because I was not eating as many carbs and fats, which my daughter reckons are partly responsible for the heartburn condition. Having had that for so many years, it is still possible that I could have Barrett’s oesophagus.
Now that I have been alerted to the condition by Patricia Ferguson’s motion—and knowing of Dr Simpson’s terrible experience as someone who suffered from oesophageal cancer—I guess that I should desist from my normal practice of GP avoidance. Bob Doris said that men avoid going to the doctor; I am afraid that Scottish women are not always all that good at it either. I probably ought to get it checked out. I hope that my saying that I will resolve to do that will make others think that they ought to go to the doctor and get themselves checked out. I hope that I am brave enough to go and see my doctor about it.
19:19
I thank Patricia Ferguson for lodging the motion and bringing both oesophageal adenocarcinoma and Barrett’s oesophagus to the attention of this Parliament. I acknowledge Dave Scott and Mr McGrory and their friends and family in the public gallery, and I thank members for their contributions, especially Elaine Murray’s personal testimony about the need to get checked.
I am sure that everyone in the chamber will agree that we must do everything that we can to reduce the numbers of people who develop cancer and to give those who do develop the disease the best chance of surviving to live a full and healthy life after treatment. However, I feel that the two factual inaccuracies in the motion should be noted for the record.
First, the motion suggests:
“the incidence of oesophageal adenocarcinoma in Scotland has doubled in the last 10 years”.
As I have said, that is not correct. NHS Public Health and Intelligence has confirmed that, between 2003 and 2013, world age standardised incidence rates of oesophageal adenocarcinoma in Scotland have increased from 4.1 per 100,000 to 4.4 per 100,000. That does not represent a doubling of the rate of incidence. Although rates of adenocarcinoma increased quite steeply in the early 1990s, rates have plateaued more recently, which is an encouraging trend. I would be happy to make that data available to Patricia Ferguson if that would be helpful.
The motion also asks the Parliament to note
“that the NHS in England records Barrett’s oesophagus as a quality performance indicator (QPI) to allow diagnostic progress to be monitored”.
That is also not correct. England does not record Barrett’s oesophagus as a QPI. In fact, England does not have a direct equivalent to our QPIs. However, it is true that Scotland, along with the rest of the United Kingdom, had a generally higher rate of incidence than many comparable countries.
Although it is important to correct those inaccuracies, I nevertheless agree with the essential point made in the motion that we need to reduce the numbers of people who develop oesophageal cancer, and increase the number of people who survive it.
I wonder whether the minister would consider Dr Richard Simpson’s suggestion that we allow nurses and other health professionals to be trained so as to reach the conclusion that we want to reach. It would be a softer expenditure, but it could yield a very good result.
I thank Hanzala Malik for his intervention. The points that Patricia Ferguson made in introducing the motion and that Dr Richard Simpson made in his contribution about increasing awareness throughout the medical profession are worth considering—especially the point that Patricia Ferguson made about raising awareness among pharmacists. If people are repeatedly coming in for heartburn remedies, pharmacists should be pointing out to them that they should seek a further investigation.
If we are to reduce the number of people who develop cancer, changing our lifestyle choices is essential. There is clear evidence that smoking, diet and obesity are significant risk factors for both Barrett’s and oesophageal adenocarcinoma, as well as for many other conditions, and we are working hard to raise awareness of those links.
As members know, it is the Scottish Government’s aim to reduce smoking prevalence to 5 per cent of the population by 2034, making Scotland one of the first countries in the world to set such an ambitious target. Our tobacco control strategy focuses on supporting the introduction of standardised packaging and education programmes to prevent young people from starting to smoke, on reducing the health inequalities inherent in smoking, on improving smoking cessation services, and on supporting pregnant women to quit.
We are also working to address obesity in Scotland, making it easier for people to become more active, to eat less and to eat better. Our obesity framework sets out both national and local governments’ respective long-term commitments to tackling overweight and obesity.
I absolutely agree with the motion
“that early detection improves prognosis and survival rates”
for many cancers. Since February 2012, we have invested £39 million in the detect cancer early programme, which aims to raise awareness of the symptoms and signs of cancer. The main message is that people should visit their GP if they experience any unusual or persistent changes in their body or health. We have revised our guidelines for GPs to help them refer people to specialists where that is appropriate. Investigations that then take place will help to identify pre-cancerous conditions such as Barrett’s oesophagus, as well as cancer.
It is worth noting that oesophageal cancer represents 3 per cent of cancers and thankfully not everyone who has Barrett’s oesophagus will develop oesophageal adenocarcinoma.
Although I understand that there is a great focus on detecting cancer early, it is clear that even we who debate these issues are not always familiar with things such as Barrett’s oesophagus. The incidence of Barrett’s oesophagus progressing to become oesophageal cancer in Scotland is five times higher than it is in a relatively similar-sized country such as Denmark, so is it not time to do something specific about Barrett’s?
I was going to say that Cancer Research UK estimates that only one in every 860 people with Barrett’s will go on to develop oesophageal adenocarcinoma each year, but I recognise the effects of a diagnosis of Barrett’s oesophagus and I agree that we must do all that we can to detect and treat the condition effectively.
As I said earlier, medical professions should be aware of the condition and how to treat it properly. Raising awareness among all medical professionals is absolutely vital. When Barrett’s is diagnosed, I expect clinicians to be aware of the relevant National Institute for Health and Care Excellence and other professional guidelines on monitoring and, if necessary, treating the condition.
The motion mentions QPIs. We have developed cancer QPIs to drive forward improvement in cancer care in Scotland. Our performance against those indicators is measured and reported publicly on a three-year basis. The first QPI report for oesophago-gastric cancers was published in February 2015 and showed that the service in Scotland is generally good, although there is always room for improvement.
The clinical specialist group that developed the QPI carefully considered whether a measure should be included for Barrett’s oesophagus, but it concluded that such a measure would not be appropriate at this time. However, QPIs are continuously reviewed against evolving evidence and clinical practice, and the need for and practicality of such a measure will be monitored by the review group.
I emphasise that we recognise the importance of awareness and early detection in improving cancer survival rates, and we will continue to focus our efforts on those areas. I congratulate the charity Ochre and I thank Patricia Ferguson again for raising awareness of the condition.
Meeting closed at 19:28.Previous
Decision Time