The final item of business is a members’ business debate on motion S6M-12066, in the name of Foysol Choudhury, on brain tumour awareness month. The debate will be concluded without any question being put.
I ask members who wish to speak in the debate to press their request-to-speak buttons.
Motion debated,
That the Parliament notes that March 2024 is Brain Tumour Awareness Month, a month dedicated to raising awareness of what it sees as the importance of brain tumour research and shining a light on the patient population across Scotland; understands that one in three people know someone affected by what it considers to be this devastating disease; further understands that, unlike in many other cancers, brain tumour survival statistics have changed little in over a generation, and notes the belief that brain tumours must be treated as a clinical and strategic priority by government, and that, as brain tumours are recognised as a “cancer of unmet need”, money must be ring fenced to support the discovery science that, it understands, could transform patient outcomes in the field.
17:52
It is an honour to open my members’ business debate. I thank all the members who signed the motion, and my colleagues who have chosen to speak in the debate on such an important issue. I thank Thomas from the charity Brain Tumour Research, who is attending the debate. In addition, I welcome Nadia, who has campaigned to raise awareness of brain tumours since her son Rayhan sadly passed away after being diagnosed with a brain tumour in 2017.
We should also note that today is purple day, during which members have been raising awareness of epilepsy. Two in three people who are diagnosed with a brain tumour will experience epilepsy or seizures, and the most common symptom of brain tumours in adults is epilepsy.
I was happy to see so many members partaking in “Wear a hat” day and attending the Brain Tumour Research reception that was sponsored by Beatrice Wishart. Charities such as Brain Tumour Research do amazing work—the charity is funding cutting-edge research through its centres of excellence and offering support to those who are living with brain tumours.
However, we must do more to support the work of such charities. Outcomes for those who are living with brain tumours remain far worse than outcomes for those with other cancers. According to Cancer Research UK, each year, more than 450 people in Scotland die from brain tumours, which kill more men under 70 than prostate cancer does, and more women under 35 than breast cancer does. Brain Tumour Research found that the five-year survival rate for a person diagnosed with a brain tumour is just 12.9 per cent, in comparison with over 70 per cent for breast cancer.
Despite those alarming figures, however, brain tumours are not being treated as a priority. Just 1 per cent of United Kingdom spending on cancer research has been allocated to brain tumours since records began in 2002. Patients and their families are being let down by the lack of funding. More investment in research can lead to more clinical trials, new knowledge and improved options and outcomes for patients. We must take serious action so that clinical research and treatment of brain tumours is given the attention that it deserves.
Brain tumours act differently from other types of cancer and should be treated as such. Because of the differences in the way that they develop in comparison with other cancers, they are often missed by national health service cancer programmes or by general practitioners. That means that patients are often left in the dark, or find that they have a tumour when they are admitted to the accident and emergency department.
That was the case for Nadia. She took her son Rayhan to four different GPs, after he had been suffering with consistent symptoms. It took her taking him to A and E, where he had an MRI scan, for him finally to be diagnosed with a brain tumour.
A patron of Brain Tumour Research, Theo Burrell, was also misdiagnosed for six months; she suffered extreme migraines before a scan at A and E revealed that she had a tumour in her brain. Had the tumour not been found, she would have had only three months to live. That experience is far too common among those who are suffering with brain tumours. The Brain Tumour Charity found that 41 percent of people who were suffering from a brain tumour had to visit their GP three or more times before being diagnosed.
Getting diagnosed earlier can help with the uncertainty that many patients face, as it allows them to access emotional support and to better manage their symptoms. Quick diagnosis also gives patients the opportunity to take part in clinical trials, which, according to the Institute of Cancer Research, have the lowest recruitment levels of trials for any cancer.
The Scottish Government’s “Cancer Strategy for Scotland 2023-2033”, which was published last year, rightly focuses on cancers that have poorer survival rates, such as brain tumours. For that to be successful, however, funding must be ring fenced to allow for discovery research of innovative treatments. More needs to be done to develop specialist knowledge and clinical training among medical practitioners. A new diagnostic pathway should also be developed with clinical and laboratory leaders so that no one is left waiting for a diagnosis.
Brain tumours have been left ignored for too long. They should no longer be considered too difficult to plan for. It is time to act. A new strategy must be created that recognises the differences between brain tumours and other cancers, and which delivers for patients.
17:58
I thank my colleague Foysol Choudhury for securing a debate on this crucial issue. Each year, approximately 1,000 people in Scotland are diagnosed with brain cancer or cancer of the central nervous system, and sadly—as Foysol Choudhury pointed out—less than 13 per cent survive beyond five years from their initial diagnosis.
Despite those sobering statistics, awareness of the disease remains astonishingly low. Evidence from Brain Tumour Research suggests that less than 10 per cent of people in the UK are aware that brain tumours claim more lives than any other form of cancer among children and adults under the age of 40. It is clear that the need to raise awareness about brain cancer has never been more urgent.
Brain tumours can manifest in a variety of symptoms, depending on their location and growth rate. Common indicators include persistent headaches, changes to reasoning and cognitive abilities, nausea, vomiting and seizures. Given that those vague symptoms are common among various diseases and illnesses, it is essential that people visit their GP promptly if they are concerned about their brain health. However, as we have heard, GPs also need better training in order to diagnose brain tumours, in particular at an early stage.
Dr Paul Brennan, who is honorary consultant neurosurgeon at the University of Edinburgh, has emphasised that early diagnosis is key to the effectiveness of brain cancer treatment and reducing the occurrence and impact of side effects.
Rapid cancer diagnostic services currently operate across five health board areas, including NHS Ayrshire and Arran, which serves my constituency. The services facilitate the prompt referral of patients who are exhibiting non-specific cancer symptoms, ensuring that they receive their results within 21 days. Previously, patients who did not meet the Scottish referral guidelines for suspected cancer or those with non-specific suspicious symptoms had to undergo a battery of tests, overseen by primary care.
The “Final Report of the Evaluation of Rapid Cancer Diagnostic Services”, which was produced by the University of Strathclyde and the Centre for Sustainable Delivery, revealed that, over the two-year evaluation period, the services attended 2,489 patients, with more than 96 per cent rating the service positively. Nevertheless, despite significant advancement in earlier diagnosis, Foysol Choudhury’s message could not be clearer: brain cancer remains a “cancer of unmet need”. According to the brain cancer research group, that can be rectified only by filling gaps in our knowledge about how brain cancer works.
The publication of the Scottish Government’s cancer strategy, with its emphasis on research and innovation, has been warmly received by both the medical community and politicians. The strategy delineates plans for health professionals to dedicate research time, ensure sufficient laboratory support and foster collaboration across academia, industry and the third sector. In addition, there is a pledge to enhance
“access to research and clinical trials for minority ethnic”
groups
“and those that are currently underrepresented in ... trials.”
Research will be concentrated on cancer types with the highest burden and poorest outcomes, including less survivable cancers such as those affecting the liver, pancreas and brain.
Moreover, pioneering research is under way in our Scottish universities. The brain tumour centre of excellence, which is a collaborative effort between the University of Edinburgh and University College London, is dedicated to researching the biology of brain cancer to advance treatment strategies. Employing state-of-the-art data-driven innovation and advanced imaging techniques, researchers are delving into the intricacies of patient-derived glioma cells to uncover new avenues for drug discovery.
In addition, Professor Stephen Tait of the University of Glasgow is spearheading efforts to unravel the mechanisms underlying tumour formation. His research focuses on elucidating how cancer cells evade programmed cell death, and offers promising insights that could lead to the development of more effective therapeutic interventions.
Scotland has taken positive steps in addressing the challenges that are posed by brain cancer, with concerted efforts at various levels such as advancing research and improving diagnostic and treatment services. It is evident that the work of Brain Tumour Research is invaluable: the life-saving research, on-going campaigning and innovative research projects are essential to improving patient wellbeing, increasing awareness of symptoms and improving our understanding of the disease. I am delighted that the charity’s demand for change petition has reached 81,000 signatures, and I hope that that will change attitudes towards the disease and highlight the importance of funding to support patients and increase research.
18:03
I congratulate Foysol Choudhury on lodging his motion and bringing the debate to the chamber. I have the great pleasure of serving with him on the Citizen Participation and Public Petitions Committee, and I know how committed he is to this issue. In his speech, he focused on individuals, and I will return to that aspect in my own remarks.
Every 33 minutes, an individual in the UK is informed that they are living with a brain tumour. Around 45 people are diagnosed every day, and 60 per cent of those who are diagnosed with a high-grade brain tumour will not survive the course of a year.
Earlier this year, along with Paul Sweeney, I hosted an event for less survivable cancers, at which the Minister for Public Health and Women’s Health was present. Brain tumours are one of those cancers, along with lung, liver, oesophageal, pancreatic and stomach cancer. This debate is a great opportunity to discuss the issues that arose from that event.
The key asks of the Less Survivable Cancers Taskforce, which includes the Brain Tumour Charity, are to collect and assess both clinical data and patient-reported outcome measurements; to establish more medical oncologist positions in the UK; to see a major increase in the number and frequency of tissue samples; to better understand the diagnostic pathway for brain tumours in adults; to promote and encourage greater joint working between clinicians and industry leaders; and for investigations to take place over lengthy time periods to collect information on the long-term and late effects of brain tumours.
I pay tribute to Beatrice Wishart, who has brought a tremendous amount of focus to the issue during the past month, and who I know intends to set up a cross-party group on brain tumours. If it would assist her, I would be happy to lend that group my support.
I will now focus, as Foysol Choudhury did, on individuals—in particular, a constituent of mine, Fraser McAllister. Fraser was only 16 at the time of his diagnosis. It was a late diagnosis, which is the subject of an investigation. However, I will focus tonight on the courage that Fraser showed at the age of 16, and the strength and resilience with which he tackled his condition.
Just a week ago, my constituent Henry Wuga died, as we highlighted in the chamber. Henry used to say to everybody, whenever confronted with a problem, “Just get on with it.” If anybody just got on with it, it was Fraser, who, at the age of 16, decided that he was not going to put his life on hold, and did everything that he could.
More important is that Fraser decided that he would document his brain tumour story, and his dignity, courage and bravery in the face of the adversity that he faced is truly inspiring. In his account, Fraser wrote:
“Just 4 days after admission, I had surgery to have a drain put into my head. 5 days after that I had an operation to remove the tumour. I was in theatre for nearly 11 hours because of complications. The following day I was back in theatre to have a tracheostomy fitted. I had a bad couple of weeks after the main operation, but I never gave up, even though I couldn’t move my body.”
I say to the minister that Fraser reached out to her parliamentary colleague Amy Callaghan, who had also suffered from a brain tumour. She responded to Fraser and gave him courage and advice that I think helped him at that time.
Just as we saw in the events over the weekend, those who are suffering can, in reaching out, have a profound impact on others who are suffering. I am sorry to say, however, that Fraser passed away in July 2022, at the age of 18. His courage came from his mother Caroline, who is in the public gallery tonight with her husband. She is just as courageous as Fraser was, and she has made sure that his memory and fight continues.
Fraser produced a poster, which I hope that, when I share it online tonight, other members might take the trouble to repost. It listed his symptoms as a young man facing the condition—what he felt. His symptoms were:
“Dizziness (not constantly)
- Whilst bathing in hot water
- Looking vertically upwards to the sky
- Or unusual time (for you)
- Eye movement, double vision.
Headache (not all the time)
- If they do not massively reduce or
go away with a pain killer (if happens often)
Nauseous or sickness
- Feeling sick or having stomach pain
for any length of time.
- Being sick with Bile Only
- in the morning.”
Those are the symptoms of a teenager, and Fraser wanted to ensure that others facing the same condition would have a chance of surviving by having the earliest possible diagnosis. That is the sort of example that can inspire us all.
18:08
I begin by thanking three people: my colleague Foysol Choudhury, for securing this important debate to mark brain tumour awareness month; Beatrice Wishart, for her event last week, at which we all wore hats, and for setting up a cross-party group on brain tumours, which I have already agreed to be part of; and Jackson Carlaw, for his most excellent and considered speech.
I was not previously aware that brain tumours kill more children than leukaemia does. Foysol Choudhury rightly pointed out that they kill more women under 35 than breast cancer does, and more men under 70 than prostate cancer does, yet just 12.9 per cent of those who are diagnosed with a brain tumour survive beyond five years, in comparison with an average of 54 per cent across all other cancers. Life expectancy is reduced on average by 27 years—the highest reduction for any cancer.
Despite that, there has been little advance in treatment options for decades, although we have real strengths with Scotland’s research and life sciences sector, so we can improve on that. We know that Scotland’s NHS is in crisis, and that crisis extends to cancer services. The Public Health Scotland statistics on cancer waiting times that were published today do not make for happy reading: they reveal a failure to meet the 31-day and 62-day cancer targets, while waiting times are simply getting worse.
Nevertheless, there are steps that the Scottish Government can, and should, take to make the situation better. The Brain Tumour Charity and Brain Tumour Research have each outlined comprehensive steps that will go some way to addressing barriers to brain tumour treatment. By developing a national strategy, we can address those barriers across the whole brain tumour pathway, including diagnosis, care, treatment and research. Brain tumours should be treated as a clinical and strategic priority by the Scottish Government, with funding to support discovery science and improved access to tissue and imaging methods.
I warmly welcome the news that Brain Tumour Research is in the early stages of fundraising to open a Scottish brain tumour research centre of excellence; it is doing that in partnership with the Beatson Cancer Charity. We need to ensure, however, that there is greater capacity, through investment in both people and infrastructure, if brain tumour research is to reach its full potential. It is not enough for us to come to the chamber and offer warm words of support—the Government must outline exactly how it will support the research community to improve patient outcomes in the long term.
Of course, research is only one piece of the puzzle, and more must be done to support patients when they have been diagnosed with a brain tumour. Among respondents to the Brain Tumour Charity’s improving brain tumour care surveys, 85 per cent felt that they had unmet needs and 59 per cent felt that they needed more help with understanding their condition.
Access to a clinical nurse specialist is crucial for people with brain tumours, which the Scottish Government reflected in last year’s “Cancer Action Plan for Scotland 2023-2026”. That was most welcome, because it stated that everybody who is diagnosed with cancer should have
“access to a key support worker.”
However, the target to achieve that, which was in the recent draft revised brain and central nervous system cancer quality performance indicator, has simply been removed—it has vanished. I say to the minister, therefore, that the indicator should be restored urgently. Evidence should be gathered on whether brain tumour patients are getting the access that they need, because that was what was promised in the cancer strategy. Once they are diagnosed, people should also have access to a holistic needs assessment and care plan, which, again, was outlined in the cancer strategy. The Government should provide an update on whether that is happening across the board.
The reality is that brain tumour survival rates remain far too low. We need more than warm words to deliver any real hope, and it is time for the Scottish Government to get round the table and deliver the funding that is needed to address both brain tumour research and treatment in Scotland, not just during the awareness month but all year round.
18:12
I, too, thank and congratulate Foysol Choudhury for bringing to the chamber this important debate on brain tumours. I also thank all colleagues who took part in the “Wear a hat” day and the photo call that I hosted with Brain Tumour Research earlier this month, and those who came along to the event afterwards. Raising awareness is so important. As Foysol Choudhury’s motion highlights,
“one in three people know someone affected”
by a brain tumour, but diagnosis can be difficult.
Last year, Emma Harper brought to the chamber a similar debate. Her motion highlighted that brain tumour symptoms
“mimic other equally serious conditions”,
which can delay diagnosis and treatment.
Many years ago, a friend of mine talked to me about headaches that she was experiencing. I have worn glasses all my life, so I have regular check-ups at the opticians, and I mentioned to her that she might want to get her eyes tested. She did so, which led to the discovery, via her optician, that she had a brain tumour. It was pure luck that that conversation happened and the diagnosis was made, and she is now well.
That highlights how important regular everyday health checks are. No one wants an unexpected surprise from a check-up, but it can save lives. We know that, every year in Scotland, around 1,000 people are diagnosed with brain tumours and, sadly, around 400 people die from them. That leads me to concerns about how much longer such a diagnosis might take today, as the NHS’s recovery from Covid-19 continues, with pressure on primary care and a shortage of GPs.
Brain Tumour Research’s manifesto, “It is time to do things differently...”, calls for a declaration that brain tumours are “a clinical priority” and for an approach to improving options and outcomes for brain tumour patients with appropriate urgency. It calls for
“the annual research spend across adult and paediatric brain tumours”
to be doubled
“from the 20/21 total ... to £35 million per year by 2028”,
and the development of
“a roadmap for full national deployment of the £40 million research funds made available in 2018”.
It goes on to ask for the implementation of
“a monitoring system for this spend, with decision-making authority, to be overseen by a new Brain Tumour Research Institute—made up of clinicians, researchers and charities—specifically targeted with funding research that will drive both discovery and ... research, so we find cures”
and
“increased participation of adult and paediatric brain tumour patients in clinical trials”.
The Brain Tumour Research centre of excellence at the University of Plymouth is making progress in diagnosing meningiomas through a non-invasive blood test. That would spare future patients from having to undergo invasive surgery, which is what happened to one of my daughters. Such research and clinical trials could be undertaken in Scotland to improve early diagnosis and find treatments for patients.
I have spoken before about plans to have a cross-party group on brain tumours, and I am pleased to say that I have garnered support for that from across the chamber. Subject to the necessary formalities, I am hopeful that the group will be under way soon. I encourage colleagues to join us, and I thank Jackson Carlaw for his support. Jackie Baillie, Finlay Carson, Colin Smyth and others have agreed to join us. The group should raise awareness of the issues facing the brain tumour community in order to improve research, diagnosis, information, support, treatment and care outcomes.
Historically, there has been underfunding of research into brain tumours, with just 1 per cent of the national spend on cancer research having been allocated to them. Let us work together to support the work of charities and other organisations, such as Brain Tumour Research, and close the care gap. As the motion states,
“unlike in many other cancers, brain tumour survival statistics have changed little in over a generation”.
We need to change that.
18:16
I am pleased to speak in the debate and congratulate my fellow member Foysol Choudhury on bringing it to the chamber.
At this early stage of my speech, I commend the excellent work of organisations such as the Brain Tumour Charity and Brain Tumour Research. In addition, I pay tribute to the phenomenal courage and resilience of patients and their families, who we regularly meet in the Parliament. It is good to have that exchange.
As the motion says, brain tumour awareness month is March, and it is dedicated to raising awareness of important brain tumour research and shining a light on patients across Scotland. That is not merely vitally important but essential, especially given, as we have heard today, the current situation with the diagnosis and treatment of brain tumours.
Early in the previous session of Parliament, I became aware of the tragic case of a constituent in Dunfermline, Mark Richardson. It was an awful situation. Back in 2017, when opening my members’ business debate on brain tumour research, I spoke about Mark, who had been a popular manager with Diageo and had a stepson and two toddlers. Once again, diagnosis was the problem. Mark was having blackouts and eye problems, and none of it was being followed up. Tragically, Mark died in July 2016 at the age of 32. He had experienced neck pain and an eye bleed. He had been to the optician, but nobody found that he had a cancerous brain tumour the size of a golf ball.
It is seven years since that debate. I said at the time:
“Brain tumours are a cancer of unmet need.”—[Official Report, 7 December 2017; c 28.]
Here we are, seven years later, saying exactly the same thing and calling on the Scottish Government and the NHS to focus on diagnosis and treatment. We need investment in research to improve diagnosis, find more effective and less harmful treatments and, ultimately, find a cure. In recent years, I have been whole-heartedly behind ensuring that we do that. Nearly a decade on, we are still struggling. Mark’s story made such an impact on me that I became much more involved in the Brain Tumour Charity. I have held round-table meetings, met consultants and had patients here in Parliament. MSPs have come to drop-in events. I was extremely humbled that, back in 2019, the Brain Tumour Charity nominated me as one of the influencers of the year.
I commend Beatrice Wishart and congratulate her on what she is trying to achieve, and I look forward to supporting her cross-party group. I urge the Scottish Government, brain tumour charities and health professionals to continue to work together to ensure that individuals are supported and protected throughout their journey. The Scottish Government must ensure that all brain tumour patients have access to a clinical nurse specialist or a key worker who carries out assessments of patients’ holistic requirements following their diagnosis. Signposts must be in place for the patient to access local support. Patients with brain tumours should have the option of discussing palliative care with consultants at the point of diagnosis.
I reiterate my pledge to do all that I can, in my position as a member of the Scottish Parliament, to fight individuals’ corner and maintain awareness. Maintaining awareness and ensuring that we keep brain tumours high profile will give many of those individuals hope for the future.
18:21
I thank my colleague Foysol Choudhury for lodging the motion, which, as we have heard this evening, has given a voice in Parliament to so many people who are affected by brain tumours.
“We can get a man on the moon, but we can’t cure brain tumours; it’s so frustrating that funding is so thin on the ground.”
Those are the words of Theo Burrell, a patron of Brain Tumour Research. Some members will know Theo as a presenter on the BBC’s “Antiques Roadshow”. Many will certainly know Theo’s mother-in-law, my good friend Elaine Murray, the former member of the Scottish Parliament for Dumfries. Theo was diagnosed with a brain tumour nearly two years ago. She was just 35 at the time and mum to one-year-old Jonah. Two weeks ago, many of us were privileged to hear from Theo when she shared her story at the Brain Tumour Research reception in Parliament, which was hosted by Beatrice Wishart. Anyone who heard Beatrice and Theo share their stories of the impact on their families will have been touched. We heard Theo describe the shock to her and her husband Alex when she received her diagnosis, and her calm frankness when she said that she does not know whether she will be there when her wee boy Jonah goes to primary school, but that she did not expect to be there when he goes to secondary school.
Theo was honest, but, like many others, she was also determined to fight for change. Research investment is at the top of her list, because, as we have heard from a number of members, since records began in 2002, just 1 per cent of the national spend on cancer research has been allocated to brain tumours, despite the fact that, as Beatrice Wishart and Foysol Choudhury said, one in three of us will know someone who is diagnosed with a brain tumour.
At the parliamentary reception, Professor Steve Pollard from the University of Edinburgh and Dr Joanna Birch from the University of Glasgow talked about the groundbreaking research that is taking place in Scotland. However, the challenges of brain cancer mean that, in Professor Pollard’s words,
“the fundamental science has not progressed to novel therapies”.
Only by growing investment in that work will we get the innovation in clinical trials that will lead to the new knowledge, the new techniques, the new therapeutics and, ultimately, the improved outcomes for patients that we all desperately want.
The need for specialist clinical training is also essential. We can see the importance of that in Theo Burrell’s experience. As Foysol Choudhury said, Theo saw multiple doctors about her symptoms, but none of them knew what was wrong. It was not until she went to A and E at Edinburgh royal infirmary and had a CT scan that her brain tumour was confirmed. The need for change that is championed by Theo and others is clear. Survival rates remain far too low and have changed little in more than a generation. Brain tumours, sadly, kill more children and adults under the age of 40 than any other cancer.
I am sure that the minister will mention the Scottish Government’s 10-year cancer strategy. The strategy is a welcome step, particularly the greater emphasis on less survivable cancers, including brain tumours. However, publishing a strategy is one thing, but, as Jackie Baillie highlighted, delivering it is another. Alexander Stewart mentioned a similar debate that he held here just over six years ago. I remember speaking in that debate. The issues raised then, however, are very similar to the ones that I have heard raised this evening: stagnant survival rates, inadequate funding, and the need for clinical specialists and more training.
During that debate, practically every member shared heartbreaking stories of people who had suffered from brain tumours, and in summing up, the minister at the time said that what united all the stories was
“the need to do more and to redouble our efforts”.—[Official Report, 7 December 2017; c 43.]
If we are being honest, since then, we have not seen the pace or scale of change required.
I am looking forward to working with Beatrice Wishart and others in establishing the new cross-party group on brain tumours to provide a regular forum for those issues. I hope that this time is different and that more will flow from this debate. We owe that to Theo and to the many others like her, as we have heard this evening, who have turned their experiences into a positive fight for change.
18:25
I, too, take the opportunity to thank Foysol Choudhury for bringing the debate to the chamber and I pay tribute and respect to all those who are battling brain tumours and to those who are supporting those patients.
I recently had the privilege of meeting and chatting with Theo Burrell, whom Colin Smyth talked about. She is a young mum who, sadly, has an incurable brain tumour. I met her at the cancer CPG, and a couple of weeks ago at the brain tumour event. Nothing could have prepared me for the talk that was given by Theo the first time that I listened to her, and it was equally impactful on the second occasion. Theo speaks with enormous courage and openness about her daily battles, not knowing what each day will bring and how many days she might have left. As a father of two young children, I honestly cannot begin to appreciate or understand what Theo and her family are going through, but to share her story in such candid fashion in order to raise awareness of brain tumours is truly remarkable.
Also listening to Theo at the event last week was one of my constituents, Jill Rennie, and her daughter. Jill’s husband, David, sadly passed away at home in November. David was a remarkable fellow who, in my early days of diversifying from my farming business, provided my brother and me with a huge amount of support through his work with Groundbase Ltd in Galloway. Indeed, he helped many start-up businesses in Galloway. He was also an enthusiastic volunteer in his local community around Gatehouse of Fleet.
David had been retired for only a year and was fit and healthy. He was active, with real hands-on volunteering playing a big part in his life. In May 2022, he felt fatigued and complained of having a bit of a headache. When that persisted into the following day, he became confused. Jill, his wife, phoned 101, and she was advised to take him to A and E in Dumfries. After waiting for four hours, the on-call doctor decided that David had a virus, and he was sent home and advised to take fluids and paracetamol. Jill had hoped, given the unusual symptoms, that they would send him for a scan, but, being a Saturday, there was limited service.
The next day, he slept for most of the day, which was totally out of character. When David sat down to his evening meal, he had lost the power of his left hand. His wife called 999 and he was taken to Dumfries and Galloway royal infirmary, where he was admitted. On the Monday morning, he was taken for a scan that showed a mass on his brain—a suspected grade-4 cancer. Several days later, on 1 June, a day that Jill will never forget, the multidisciplinary team delivered its shocking and life-changing prognosis—three months left without surgery, and 12 to 18 months with surgery and radiotherapy.
Three weeks later, David was booked in for brain surgery in Edinburgh, and he began radiotherapy there six weeks later. Fortunately, they were able to stay with family, because there was no help towards the cost of accommodation or travel from Galloway. David had three-monthly scans and appointments with an oncology consultant in Edinburgh, along with weekly blood tests that were carried out by a practice nurse. He also had to have regular reviews regarding his medication, particularly his steroids, which had to be adjusted depending on his symptoms.
As the months drifted on, David continued to feel fatigued and was unable to return to his volunteering, although he did still engage with his friends and people in Gatehouse. Initially, the scans showed no regrowth, but the tumour showed up again in July 2023. Chemotherapy was the only option but, sadly, it was not successful. The Rennie family cared for him until the end. They cared for him because there was little support available other than from the family.
David had palliative care from the district nurse, along with an amazing local GP and surgery staff but, worryingly, perhaps because of the rural location, there was minimal input from Macmillan Cancer Support and only two nights’ respite care from Marie Curie, which is disappointing and led to complications.
David spent most of his time at home, where he received excellent person-centred care. However, Jill said that she witnessed and experienced a huge range in the standard of care from health professionals during David’s illness. Like many of us here, she feels that unpaid family carers are totally undervalued, and we know that caring for loved ones can take a toll on carers themselves. It is simply not right that the quality of care that people receive varies so widely and that families are left with uncertainty. That is particularly difficult with brain tumours, when every day can bring different challenges.
We need to see change in the care of our brain tumour patients but, as we have heard, brain tumour survival statistics have changed little in more than a generation. That is why we need to take more action in the near future. The fact that just 1 per cent of the national spend on cancer research has been allocated to brain tumours since records began more than two decades ago is disturbing and regrettable.
It is little wonder that Brain Tumour Research is now calling for the Scottish Government to declare brain tumours a clinical priority. I know that everyone in the chamber fully supports that. Only by investing in more clinical trials will we stand a chance of learning more about this devastating disease and be able to come up with new techniques, new therapeutics, improved options and better outcomes for patients.
Because of the number of members who still wish to speak in the debate, I am minded to accept a motion without notice, under rule 8.14.3 of standing orders, to extend the debate by up to 30 minutes. I invite Foysol Choudhury to move the motion.
Motion moved,
That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Foysol Choudhury]
Motion agreed to.
18:31
I thank my colleague Foysol Choudhury for bringing the motion to Parliament to raise awareness of brain tumour awareness month. After having met Theo and Thomas from Brain Tumour Research earlier in the parliamentary session, I am pleased to see increased awareness of brain tumour across the Parliament in recent weeks, with questions in round-table meetings and the developing cross-party group. That is all welcome, but it must be done with purpose and it must move the dial forward on the results that we need. It is my understanding that the key to that is progress in the important area of research.
I thank members across the parties for delivering such emotive and powerful personal speeches during the debate. The number of members participating in the debate shows that the discussion is important, and we must work on a cross-party basis to ensure that there are improvements in the statistics that we have heard about tonight.
I welcome the fact that we have time in the chamber to discuss the impact of the disease and the importance of research into brain tumours in Scotland and across the United Kingdom. We know from the motion and from members’ contributions that the condition has an impact right across Scotland. One in three people knows someone who is affected by the devastating condition. We know that survival rates remain low and that, devastatingly, unlike other cancers, those rates have not changed in more than a generation.
We also know that brain tumours remain the largest cancer killer of people under 40. That is why it is so important that we take time in the Scottish Parliament to discuss the issue. It is also why I support the calls for the Cabinet Secretary for Health and Social Care to commit to working with the devolved nations on developing a national brain tumour strategy that addresses the barriers across the whole brain tumour pathway, as we have heard. That includes diagnosis, care and treatment, as well as the important element of research.
I will focus my remarks on research. Other members have done a lot of the work before me, but it has recently come to the attention of many members that research in Scotland needs commitment from the Scottish Government. We have among the best researchers in the world and we have participated in some of the most amazing studies and discoveries from across the world. However, we are at a critical point—some have described it as a crisis point. We know that research into brain tumours is chronically underfunded and underresourced. Only 3.2 per cent of the overall £700 million investment in UK cancer research funding in 2019-20 was spent on brain tumours.
We know that funding is not the only barrier. We had a lot of researchers in the Parliament recently, and the brain tumour charities have told us that current funding that the Government has allocated has not been adequate to spend on the high-quality research that we need. There are significant delays in translating laboratory research into clinical trials, and there are further delays between the clinical trials and medically regulated approval, which means that brain tumour patients are missing out on promising new treatments.
Research into brain tumours must be recognised as a clinical priority, alongside a strategic plan for adequately resourcing and funding it, so that we can make the discoveries that we need to make through that research. Access to new and better treatments will come only if we harness the Scottish research potential and work, as we do so well, with our neighbours across the UK.
If we want to see changes in the statistics that I mentioned at the beginning of my speech and that have been mentioned in other members’ speeches, we must have commitment and strong leadership in this area from the Scottish Government. I would be grateful if, in her closing remarks, the minister would outline her plans for funding and maximising the great potential for research that we have in Scotland, so that we see the shift on the dial on brain tumour research.
18:36
I thank Foysol Choudhury and Beatrice Wishart, and I am sorry that I was not able to make the event and wear a hat alongside everybody else. I fully support Beatrice Wishart’s wish for a cross-party group.
We are all here because, as the statistics have demonstrated, we all know somebody who has had a brain tumour or who will ultimately end up being diagnosed with a brain tumour. It very much brings things into stark reality when that happens. I attended an event with a brain tumour charity on 7 March here in the Scottish Parliament, and I invited some constituents who, sadly, had lost their family member, Matilda Jaffray—Tilda, as she was fondly known. They have a connection with Selkirk Distillers Ltd, which decided to produce a gin called Tilda’s Tipple. The distillery donates £5 from each bottle to the Brain Tumour Charity, which I think is highly commendable. The distillery has done a huge amount of fundraising on behalf of the charity.
I commend the Brain Tumour Charity for the briefing that it provided. It is clear that people who have had a brain tumour diagnosis seem to be treated differently from people with other cancers. A thing that stands out for me from talking to the charity is a new liquid biopsy that is being developed in Glasgow as a diagnosis tool. I will not say the name of it however, because I cannot pronounce it; the first two letters are D and X. How will the minister and the Scottish Government help to improve the referral pathway for when that liquid biopsy becomes available to use for diagnosis?
18:38
I, too, thank Foysol Choudhury for lodging the motion.
I praise all MSPs who joined in the “Wear a hat” day events on 14 March to show their support for brain tumour awareness month. I thank especially Beatrice Wishart, who sponsored the reception and shared her family’s experience. As Colin Smyth and Finlay Carson were, I was very moved by Theo Burrell’s contribution. To say that you could have heard a pin drop is not to overstate the power of her story and contribution to the event.
I welcome to the public gallery Thomas Brayford and Nadia, as well as the parents of Fraser McAllister, and I thank them for joining us tonight. When I see Jackson Carlaw’s post, I will repost it.
It is important that we all come together and share our stories. As Jackson Carlaw said, the power of reaching out helps us to make decisions and come together. As I said earlier, we have the privilege and responsibility of being able to do that in a number of walks of life. I look forward to hearing about the setting up of the proposed CPG on brain tumours and will be happy to come along when it has been established.
As I did last year, I will highlight a charity that is close to my heart. Calum’s Cabin is based on the Isle of Bute in my constituency and is named after Calum Speirs, who passed away from an inoperable brain tumour 17 years ago. As Alexander Stewart said, people can show phenomenal courage and resilience, which is exactly what Calum’s parents and twin sister did. They turned their heartbreak into something inspirational and the charity that they established now supports children who are undergoing cancer treatment and their families. Calum’s Cabin provides holiday homes in three beautiful locations where families can spend quality time together and make lasting memories. It also has nine flats in Glasgow where families can stay while their child is receiving cancer treatment. On my home island of Islay, we have Julie and Maggie; this weekend I will attend a coffee morning that Maggie is holding to support people with brain tumours.
I am sure that all members are aware of the Scottish Government’s ambitious ten-year cancer strategy for Scotland, and of the three-year action plan that was published in June last year. Our strategic aim over the next 10 years is to improve cancer survival rates and to provide excellent equitably accessible care. The strategy and plan take a comprehensive approach to improving cancer care and survival, from prevention and diagnosis through to treatment and post-treatment care. We continue to focus on cancers with the poorest survival rates, including brain tumours.
As all today’s speakers have said, diagnosing brain cancer can be challenging because symptoms are wide-ranging and often vague. It is important that speakers have reiterated the possible symptoms and that we recognise how important it is to raise awareness of them. Our www.getcheckedearly.org website has content on brain cancer that highlights those symptoms and advises people when to seek professional advice.
We ran our well-received public awareness campaign, “Be the early bird”, in March and September last year, with the aims of reducing fear of cancer and empowering people with possible symptoms to act early. As Alexander Stewart said, maintaining awareness is shining a light. I am pleased to say that that is exactly what will happen when St Andrew’s house is lit up in pink and yellow this Thursday to recognise “Wear a hat” day 2024.
As Foysol Choudhury said, we know that the earlier cancer is diagnosed, the easier it is to treat. That is why we continue to invest in our programme on detecting cancer earlier, which takes a whole-system approach to early detection and encompasses public awareness, screening, primary care, diagnostics and data. We also know that survival rates have improved at much slower rates for some cancers than they have for others. That is why the strategy includes a new vision on earlier and faster diagnosis that reflects Scotland’s desire to diagnose cancer as early as possible, when the chances of survival, and even cure, are higher.
Although our vision focuses on reducing later-stage disease, it acknowledges that some cancers, such as brain tumours, cannot be conventionally staged. Additional measures will be considered to monitor progress and improvement in those areas, including diagnosis via emergency presentations. Kenneth Gibson correctly highlighted the recent successful development of our rapid cancer diagnostic service, which is a useful addition to diagnosis in Scotland and provides primary care with access to a new fast-track diagnostic pathway for patients with non-specific symptoms that might suggest cancer. As Mr Gibson said, five services have been set up: in NHS Ayrshire and Arran, NHS Dumfries and Galloway, NHS Fife, NHS Lanarkshire, and NHS Borders. The University of Strathclyde’s evaluation report assessing the first two years of the services was published last month and shows that they are achieving precisely what they set out to do.
Jackie Baillie, Carol Mochan and others all correctly noted that research is essential if we are to continue to develop new and effective approaches to diagnosis and treatment of brain tumours. The Scottish Government provides a range of funding to health boards to enable them to conduct high-quality clinical research, including cancer research. That funding includes support for the cancer research network, which operates across Scotland, to increase, support and sustain clinical trial activity in cancer care. We also provide fellowship funding. Through the career researcher fellowship scheme, several clinical oncologists are supported to conduct critical cancer research in the NHS.
Will the minister take an intervention?
I am just winding up—sorry.
One such fellowship is centred on researching novel therapies for brain tumours. We have recently established a collaboration with the Tessa Jowell Brain Cancer Mission to fund neurology fellowships in Scotland. The aim is to train clinicians to appreciate the breadth of comprehensive brain tumour management and to equip them with research skills to lead the high-impact practice-changing clinical trials of the future.
I reiterate to members and to people who are watching the Scottish Government’s continuing commitment to improving survival rates for children, young people and adults who are diagnosed with brain tumours. It is by working together and collaborating that we will achieve that. I thank all those who give their boundless energy to raising awareness and who do the work that we know must continue through research, earlier diagnosis and safe and timely treatment.
Meeting closed at 18:46.Previous
Decision Time