The final item of business is a members’ business debate, on motion S6M-07890, in the name of Emma Harper, on wear a hat day 2023. The debate will be concluded without any question being put. Members who wish to speak in the debate should press their request-to-speak buttons.
Motion debated,
That the Parliament recognises what it sees as the importance of Wear A Hat Day, taking place on 31 March 2023, in raising awareness of brain tumours; understands that brain tumours are the biggest killer of children and adults under 40 with cancer in Scotland, reducing life expectancy by 20 years on average; believes that this is the highest life expectancy reduction of any cancer, but that the treatment and understanding of brain tumours are 20 years behind those relating to more common cancers; notes that brain tumours often cause side effects that have a severe impact on a person's quality of life; understands that there are over 130 different types of brain tumour, and that some symptoms of brain tumours can mimic other equally serious conditions, which often renders early diagnosis and treatment more difficult in many cases; further understands that brain tumour charities, such as the Brain Tumour Charity, are working hard to fund pioneering research, raise awareness of the signs and symptoms of brain tumours, and provide support to people affected by brain tumours; commends the success of national campaigns, which it considers have contributed to a reduction in the average diagnosis time for childhood brain tumours, from 9.1 to 6.5 weeks, since 2011; believes that national campaigns are a basis on which to develop further awareness; notes the significant efforts of Dumfries and Galloway Medical Physics Technician, Alan Johnstone, in both raising awareness of brain tumours and funding for research and development into the causes of brain tumours, their treatment and, ultimately, a cure; understands that Alan’s late wife, Anneka Johnstone, was diagnosed with a glioblastoma brain tumour and sadly died in 2019, despite being a very fit and active 33-year-old, and further understands that, despite losing Anneka, Alan has raised more than £55,000 for the Brain Tumour Charity by walking the 214-mile Southern Upland Way, videos of which were posted to Alan’s TikTok account, which has attracted a huge following.
17:53
I am pleased to have the opportunity to lead this debate to raise awareness of brain tumours, following wear a hat day on 31 March. I thank members from every party who have supported my motion, thereby allowing the debate to go ahead, and I welcome the Minister for Public Health and Women’s Health to her role in what is, I believe, the first members’ debate that she will respond to. I also thank the Brain Tumour Charity for its continued work to raise awareness of brain tumours, its support for people who are impacted by brain tumours and their families, and its raising of vital funds for brain tumour research.
I applaud the “Better safe than tumour” campaign, which aims to support public awareness of the signs and symptoms of brain tumours, and welcome Thomas Brayford from Brain Tumour Research to the public gallery.
Brain tumours are the biggest killer by cancer of people under the age of 40 in the United Kingdom. Such tumours reduce life expectancy by an average of 20 years, which is the highest figure for any cancer that we currently know of. There are various signs and symptoms, depending on the type of brain tumour and its location, and my motion notes that there are more than 130 types of tumour of the brain.
Some symptoms might be very severe, while others might not be apparent at all. Anyone who experiences concerning signs and symptoms should first visit their general practitioner to discuss those and get further advice.
Brain tumour symptoms can include headaches that are more severe in the morning or that wake people in the night. They are usually different from headaches that the person might have had previously and will be persistent and will worsen over time. Weakness, loss of sensation or numbness are signs of pressure on or damage to a specific part of the brain.
Tumours can also be manifested through unsteady walking, lack of co-ordination and ataxia, or through muscle weakness on one side of the body, which is known as hemiparesis. Hearing loss that occurs on only one side can be a sign of acoustic neuroma. Speech difficulties may include loss of the ability to write, speak or understand words. A person might have expressive dysphasia, which is a difficulty in getting words out, or they might have difficulty articulating words, which is known as dysarthria. Other symptoms can include poor concentration, confusion, memory loss, disorientation, drowsiness and changes in behaviour.
Although the cause of brain tumours is debated, research shows that some genetic conditions that predispose a person to overproduction of certain cells and exposure to some forms of radiation are key causes.
In my time working in an operating theatre in Los Angeles, I had the privilege of working with a neurosurgeon called Dr Keith Black, who is now chair of neurosurgery at Cedars-Sinai Medical Center, where he continues his research. He was a pioneer in developing the surgery that we now know as awake craniotomy, for removal of particular tumours that occur in the speech centre of the brain. For anyone who is not squeamish and who wants to watch them, some amazing films of awake craniotomy on YouTube demonstrate how far we have come in developing advanced surgery techniques.
Around 60 per cent of people who are diagnosed with a high-grade brain tumour will die within one year and only 19 per cent will survive for five years or more. Brain tumours are one of the four cancers with a 10-year survival rate of less than 15 per cent. My Auntie Jean, who was not even 50 years old, did not survive a diagnosis of astrocytoma.
We must see change. Early diagnosis of brian tumours remains challenging, with estimates suggesting that up to 64 per cent of patients—quite a high number—are diagnosed in accident and emergency departments.
We must acknowledge that the pandemic has meant that many patients have faced disruption to their care, clinics, appointments and treatments including surgery or chemotherapy. Although the national health service took extensive steps to keep cancer services running, we know that in most areas in Scotland surgery for people living with low-grade or less aggressive brain tumours was delayed, and that the pandemic continues to have a huge impact on all aspects of our NHS.
The Brain Tumour Charity asks the Scottish Government to ensure that everyone who is diagnosed with a brain tumour can access support from a clinical nurse specialist or a key worker, regardless of their tumour type or where they live. It also asks the Scottish Government to drive earlier diagnosis by committing to reducing the proportion of brain tumours that are diagnosed in A and E and by piloting a promising new blood test—developed by researchers at the universities of Strathclyde and Edinburgh—in primary care across Scotland as soon as possible in order to explore its potential to triage people who have symptoms.
The charity also asks the Government to accelerate access to real-world data for Scottish brain tumour patients, cancer researchers and charities, including through the use of BRIAN, which is the Brain Tumour Charity’s patient-led app. The charity also asks the Government to ensure that brain tumour research and the development of treatments and therapies are equitable with those for other cancers. It is welcome that the First Minister has given a commitment to ensuring that brain tumour detection is improved in Scotland so that people have the best possible opportunity of recovery. That includes use of fast-track diagnostic centres, such as the one that was opened in Dumfries and Galloway in my South Scotland region in 2021.
Finally, I will talk about Alan and Anneka Johnstone. Anneka died on 18 November 2019 due to a short battle with glioblastoma. I knew Anneka—she was a kind, caring and compassionate dietician in NHS Dumfries and Galloway. We worked together when I was a clinical educator, and she gave me lots of advice for patients with complex dietary needs and supported me as I was developing training for nurses. Since Anneka passed, her husband Alan has raised more than £57,000 for the Brain Tumour Charity by walking 214 miles of the southern upland way—[Interruption.]
I did not think that I would be upset.
In Anneka’s memory, Alan has raised £57,000. That is a challenge that he said was tough, but it was one that was, in his words, easy compared with what Anneka went through. His charity fundraising has been invaluable for research and development.
I look forward to hearing colleagues speak. I repeat my asks of the minister and I thank Alan Johnstone for his hugely important fundraising work following his tragic loss. I also repeat the message from the Brain Tumour Charity to be “Better safe than tumour” and to ensure that symptoms are addressed urgently.
18:01
I thank Emma Harper for bringing this critically important debate before us today. Presiding Officer, I apologise to you and to Emma Harper for not being able to stay to the end of the meeting because I have a committee that is meeting to take evidence at half past 6.
Diagnosis times and the treatment of brain tumours have made leaps and bounds in recent years, thanks to incredible achievements in research. This debate gives us an important opportunity to acknowledge just how far life-saving treatment has progressed and to recognise and thank researchers, medical professionals, campaigners and volunteers for their individual work in improving the lives of people who are affected by brain tumours, and the lives of their families and loved ones.
It is clear that rigorous national campaigning has made the availability of support possible, but while awareness of brain tumours is at an all-time high, we must continue to keep that vitally important campaign on the political agenda in order to build on our recent achievements.
Much has since changed since the topic of brain tumours was last debated in the chamber in 2017. Our health landscape has changed dramatically—not least, due to the pandemic, which saw charities and voluntary organisations experience significant loss of income, and those organisations are now struggling more due to the cost of living crisis. That is why it is crucial that we listen carefully to the policies and recommendations of charities such as the Brain Tumour Charity, as well as to the lived experience of people who are affected by this complex disease.
Although the charities have been leading on the campaign, it is critical that Governments across the four nations provide much-needed support by treating brain tumour research as a critical priority. Campaigners have been asking for more Government support to build research capacity, so I am delighted that Scotland continues to build on its reputation as a hub of transformative world-class research into brain tumours, with institutions such as the brain tumour centre of excellence at the University of Edinburgh leading the way. I give my full backing to campaign calls of experts, researchers and charities, including on the need for more research funding and the importance of early diagnosis.
I was pleased to see the Government’s announcement on Scotland’s new cancer strategy, which has the potential to be a major milestone for people who are affected by brain tumours. I have full confidence that the minister, under our new Government, will use the findings from a cancer strategy consultation to effectively inform the decision-making process. We cannot underestimate the importance of ensuring that the voices and experience of people who are affected by brain tumours are at the heart of the policy. Many of our constituents are impacted by cancer, so it is critical that they be at the centre of our approach going forward.
The Scottish Parliament’s Health, Social Care and Sport Committee, of which I am a member, recently concluded an inquiry into health inequalities, during which we heard evidence that health inequalities not only contribute to the development of cancer but impact on what treatment a patient can access and the ability to access support, overall. That is an important point that has been raised constantly by the Brain Tumour Charity, which found that inequalities in brain tumour trials due to poor health and to cost implications present a barrier to patients entering clinical studies. It is absolutely essential that minorities and people who live in deprived areas across Scotland are included in the clinical trials in order that we better understand their experience of the current system and what improvements need to be made.
As the motion recognises, the side effects of brain tumour treatment can have a severe impact on a person’s quality of life.
I am incredibly proud of the array of services that are available across my constituency, including those that are provided by Maggie’s Fife and the Brain Tumour Charity support group, which provide invaluable support to people who are affected by cancer, including people with brain tumours.
The three early cancer diagnostic centres that have been introduced—in NHS Ayrshire and Arran, NHS Dumfries and Galloway, and NHS Fife—speed up cancer diagnosis and provide GPs with an alternative route to urgently refer patients. Those centres are picking up cancer earlier. Patients presenting with non-specific symptoms can be more difficult to diagnose, and some symptoms, or combinations of symptoms, can have a range of potential causes, not all of which are cancer. Where cancer is the cause, increased time being taken to diagnose a patient can often result in poorer outcomes. Figures up to October 2022 show that the initiative is working, with around 16 per cent of referrals going on to be diagnosed with cancer, and around 20 per cent being referred to primary care for non-cancer-related treatment. Referral for tests to check for cancer is an anxious time for patients and families. The centres provide a clinically safe and effective rapid service to rule out or rule in cancer.
The Scottish health awards are the most prestigious and recognised awards for people who work across NHS Scotland and its partners to deliver high-quality healthcare and social care services to people in Scotland. I was pleased that NHS Fife’s rapid cancer diagnostic service team was shortlisted at last year’s awards ceremony, in the innovation category. That is much-deserved recognition of all the team’s work.
Changes cannot come soon enough in terms of better outcomes for people who are impacted by brain tumours and for their loved ones. It is reassuring to hear that members across the chamber are united in a shared vision to cure all types of brain tumours and to raise awareness of such an important cause.
I call Paul Sweeney, to be followed by Beatrice Wishart.
18:06
I thank Ms Harper for bringing the motion to Parliament on wear a hat day 2023, which is for Brain Tumour Research. I also thank the member for delivering such an emotive and powerful speech at the outset of the debate. It is welcome that we have time in the chamber to discuss the impact of this disease and the importance of research into brain tumours in Scotland, and across the United Kingdom. As is mentioned in the member’s motion, brain tumours kill more children and adults under the age of 40 than any other cancer, with one in three people knowing someone who has been impacted by a brain tumour.
However, despite that prevalence and the harrowing impact of this cancer, to date, just 1 per cent of the national expenditure on cancer research has been committed to brain tumour research. Brain Tumour Research, the charity behind wear a hat day, is calling for an increase in the national research investment to £35 million per year so that work can continue to find a cure for all kinds of brain tumours.
With 16,000 people diagnosed with a brain tumour each year across the UK, our approach to treatment and research must show ambition. I commend Brain Tumour Research for its centre of excellence strategy, which is building capacity and pioneering research through four specialist centres across the UK. It is crucial that research into brain tumours is properly funded so that that valuable work can continue and so that we can continue to further develop research and treatment here in Scotland, too. That includes building on the centre of excellence model, as exists at the Institute of Neurological Sciences in Glasgow, which was founded in 1966 and is scheduled for a major new redevelopment by NHS Greater Glasgow and Clyde. Let us look at the opportunity that that proposed investment could present for transforming research into brain tumours in Scotland.
Research into the treatment of tumours is one important aspect of improving the options and support that are available to people living with brain tumours and other types of cancer. Another crucial aspect is the availability of psychological support for people who have received a devastating cancer diagnosis, and for their families. A cancer diagnosis is transformative in a deeply distressing way at any time in a person’s life, but brain tumours in particular kill more children and young people than any other cancer, and a diagnosis at a young age can come with its own unique concerns and challenges.
At present, there are two specialist psychologists for young people with cancer in Scotland—one in NHS Greater Glasgow and Clyde and one in NHS Grampian. Given that 200 young people are diagnosed with cancer every year in Scotland, there is simply not sufficient or equal access to specialist mental health support for patients across the country. I hope that the minister will address that point in her remarks. For the 200 young people in that situation, the distress that is caused is absolutely appalling.
In considering the unequal access to support in this context, it is important for us to recognise, as part of the debate, the wider inequalities around the prevalence and treatment of cancer that exist in Scotland. Recent Public Health Scotland data showed that the overall risk of developing cancer was 30 per cent higher in the most deprived parts of the country than in the least deprived parts. We also know that the most recent data shows that almost one in three suspected people with cancer was not treated in line with the Scottish Government’s two-month target time in the final quarter of 2022. Indeed, the last time that the 62-day target was met was in 2012. It is therefore abundantly clear that access to support and treatment for people with cancer is not consistent or reliable.
I would be grateful if the minister would outline in her closing remarks her plans for funding brain tumour research for the future and how she plans to tackle the cancer inequalities of today so that everyone in Scotland has equal access to psychological support and treatment, regardless of their postcode.
I must apologise to Dr Gulhane for not following the correct order of speakers. I now call Sandesh Gulhane, after whom I will call Beatrice Wishart. I also apologise to her.
18:10
Labour tried to take minutes earlier, and it managed to do so that time.
I thank Emma Harper for bringing this debate to the chamber and for her personal and passionate story. I brought my best pink hat to wear in the chamber today but, sadly, it is not allowed here, so I do not have it. However, I showed it to Emma Harper.
Brain cancer is one of six common cancers with very poor survival rates. We call brain, lung, liver, oesophagus, pancreas and stomach cancers less survivable cancers, as their average five-year survival rate is just 16 per cent. Each year, more than 9,000 people will be diagnosed with one of those cancers in Scotland. That is a quarter of all cancer diagnoses cases. Those six cancers account for 40 per cent of all cancer deaths and claim more than 7,000 lives annually in Scotland.
As a general practitioner, I might see up to two patients throughout my whole practising career who are diagnosed with a brain tumour. Identifying those one or two patients early is really difficult because early symptoms, such as headaches or feeling sick, can be really vague and can have 10 or 20 different explanations. Sometimes patients present with convulsions. However, the vast majority of patients with headaches or epilepsy do not have a brain tumour.
One of the first things that GPs are taught is that common things are common—in other words, we should not jump to brain tumour if someone has a headache because, more often than not, it will be a migraine or simply a headache. However, that is no comfort to those whose symptoms get worse and who develop muscle weakness and have problems with balance, vision, hearing or speech. They might lose their sense of smell, become confused or suffer personality change. Some may go on to be diagnosed with brain cancer but, sadly, that is often very late.
I have spoken with Heather Dearie from Ayr, who went to her GP back in 2008 complaining of fainting, chronic headaches and vision problems. Her GP diagnosed migraine and then stress—she was a student at the time—but her condition worsened, and she was at her wits’ end. Eighteen months and five different GPs later, she was referred to the ear, nose and throat team. It found nothing wrong with her ears, but it thought that an MRI would be prudent. That is when her tumour was found.
Heather required emergency surgery to relieve pressure on her brain from a build-up of fluid. The 18-month wait from first presenting to her GP to diagnosis meant that it was too late for any alternative treatment to surgery. That surgery came with side effects. It left her with facial paralysis, partial deafness, balance and vision issues, nerve damage, fatigue and muscle spasms. Heather constantly suffers with pain.
For the first three years after surgery, Heather had very little in the way of peer support. She just did not know where to turn. However, she is amazing. She campaigns tirelessly as a patient advocate to raise awareness of brain cancer. Earlier this month, she received an award from the Brain Tumour Charity for her efforts.
What can we learn from Heather’s experience and the experiences of countless others? I can think of an action that would make a difference. In primary care, a non-invasive test that flags up biomarkers for brain tumours is needed. That would identify patients who may be at risk and require a referral for medical radiography. If a patient’s symptoms persist, GPs are more likely to do a blood test than to refer for an MRI or CT scan, given the pressure on radiology departments. Most of us in primary care cannot order or request a CT or MRI brain scan.
Brain tumours kill more patients under the age of 40 than any other cancer, and they kill more children than leukaemia. Brain tumours kill more women under 35 than breast cancer, and they kill more men under 70 than prostate cancer.
We need to get real about research. I request that the Scottish Government carries out research into brain tumours and other less survivable cancers as a clinical priority. We need a strategic plan for resourcing and funding discovery, translation and clinical research, and we need to ensure that a robust system of tissue collection is in place for cell line isolation and biobanking. The Government should also ensure that access to clinical trials, which are key to developing new brain tumour therapies, is available.
I refer members to my entry in the register of members’ interests, which shows that I am a practising GP in the national health service.
18:15
I thank Emma Harper for bringing this important debate to the chamber. I also thank all those colleagues who took part in the wear a hat day photo call that was hosted for Brain Tumour Research on 16 March and those who came along to the drop-in session afterwards. Raising awareness is so important.
Members might be aware of the proposal for a cross-party group on brain tumours, which Jim Fairlie and I hope to develop. I encourage colleagues to join us. The group would bring together people with lived experience of brain tumours and key stakeholders to try to influence policy and research. We know that, every year in Scotland, around 1,000 people are diagnosed with brain tumours and, sadly, around 470 people die from them.
Brain Tumour Research is a cancer charity that I hold particularly close to my heart. One of my daughters—Louise—lives with a brain tumour, and has done so for several years. Following surgery, she continues to receive care and to have regular check-ups. I thank the NHS for that.
Louise has suffered from migraines all her adult life. She presented to her GP for about a year with non-specific symptoms, including the sensation of something in her head when she was walking. Following what we thought was a particularly excruciating migraine, she ended up in hospital after a blue-light trip to an accident and emergency department. I thought that she had had a stroke. Eventually, after numerous scans and being flown by air ambulance to Aberdeen, she received the diagnosis of a low-grade brain tumour—a meningioma.
That leads me to concerns about how much longer such a diagnosis might take today, as the NHS’s recovery from Covid continues, with pressure on primary care and a shortage of GPs. Emma Harper’s motion makes the point that some symptoms can
“mimic other equally serious conditions”,
which makes early diagnosis and treatment more difficult. As a family, we are only too well aware of how fortunate Louise is compared with too many other patients.
Louise keeps up to date with news from Brain Tumour Research, so when she received notification about today’s debate inviting people to contact their MSP, she emailed me to ask whether she should email me.
The charity’s manifesto, “Together we will find a cure”, calls on the Scottish Government to invest more in brain tumour research to find a cure; to improve patient experience and outcomes; to drive clinical trials in Scotland to bring new treatments from the laboratory bench to patients; to provide clinicians in Scotland with more time to participate in research; and to drive improvements in patient experience across NHS Scotland.
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 having to undergo invasive surgery. Such research and clinical trials could be undertaken in Scotland to improve early diagnosis and find treatments for patients.
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, so let us work together to support the work of charities and other organisations such as Brain Tumour Research and close the care gap.
18:19
I welcome the minister to her new role; I have no doubt that she will be cracking in it. I also welcome the opportunity to participate in this very important debate, and I congratulate my friend and colleague Emma Harper on securing it.
I thank Alan Johnstone, who is one of Emma Harper’s constituents, for the tremendous work that he has done to raise awareness of brain tumours and to fundraise for research into, and development of, treatment for them.
As members have indicated, brain tumours are the largest killer by cancer of children and adults under the age of 40 in the UK. Brain tumours reduce life expectancy by an average of 20 years. That is the highest figure for any cancer that we currently know of. I want all those with a brain tumour to have the best possible chance of survival, so I am pleased to support wear a hat day and the calls from the Brain Tumour Charity that my colleague Emma Harper has outlined.
One in six respondents to the Brain Tumour Charity’s improving brain tumour care survey last year had to wait more than six months to get a diagnosis after first seeing a healthcare professional about their symptoms, and one in 10 waited for over a year to be diagnosed. Although I acknowledge some of the reasons for that—not least the huge challenges that are still being felt in our NHS due to the pandemic—we need to see early diagnosis and earlier access to treatment. People who display symptoms of a brain tumour should receive a definitive diagnosis as quickly as possible after first visiting a healthcare professional about their symptoms. Unfortunately, there will always be folk who will go through accident and emergency to get a diagnosis because there will always be folk whose very first symptom is a seizure or something major that requires emergency treatment. However, many things can be done to help to drive down diagnosis times for the majority of folk who will experience the symptoms of a brain tumour in the future.
Simply put, the main benefit of a faster diagnosis is that treatment, care and support can be provided to folk at the earliest opportunity, which could lead to their living better lives after their diagnosis. I would therefore welcome an update from the minister on the Scottish Government’s commitment to improve the time that it takes for brain tumour diagnosis, when the fast-track cancer diagnosis centre in NHS Grampian will be fully operational, and when it will report on its effectiveness.
Brain tumours have a very real human impact. I want to discuss the experience of Suzanne Davies, who is one of my constituents. Suzanne received her diagnosis of a glioblastoma—I apologise if I did not pronounce that properly—brain tumour in 2014. She now works with? Brain Tumour Research,?after defying the odds of survival, to raise awareness of the disease. She is a mum to two teenagers, who were just four and seven when she received her diagnosis.
After initially visiting her doctor due to suffering from headaches and speech issues and being told that they could be down to her hay fever or stress, Suzanne visited another GP, who sent her to ?Aberdeen royal infirmary. It gave her a CT scan and found a tumour the size of a golf ball. She underwent an awake craniotomy, and the operating team successfully removed 95 per cent of the tumour. She then underwent chemotherapy and radiotherapy. She now has an MRI scan every six months. The most recent scan, in December last year, was stable. In February this year, Suzanne walked 10,000 steps each day to raise funds for brain tumour research. She raised a total of £706; the original target was just £500. I thank Suzanne for all her efforts, and I wish her every success for the future.
I again welcome this debate, and I thank Emma Harper for bringing it to the chamber.
18:24
Wear a hat day is a flagship campaign of Brain Tumour Research. It forms an integral part of brain tumour awareness month and it is now in its 14th year. Over the years, it has raised more than £2 million.
I thank my colleague Emma Harper for bringing this important issue to the Parliament and for sharing her personal story. One of my aunties is in Turkey at the moment getting private treatment for a brain tumour. She is about 30 or 32 years old.
I commend the great work of fundraisers. Every penny raised means that more important research can be done, bringing us closer to a cure.
Historically, there has been significant underfunding of research into brain tumours. In the past 12 years, the charity Brain Tumour Research has provided funding in excess of £15 million to early-stage science. Since 2009, it has been doing tremendous work helping to develop the next generation of researchers through its centres of excellence and it has campaigned tirelessly to improve clinical outcomes for brain tumour patients. However, more support needs to be given. As my colleague Emma Harper’s motion mentions, brain tumours kill more children and adults under the age of 40 than any other cancer. However, the national investment in brain tumour research still represents just 1 per cent of brain tumour funding since records began in 2002.
For too long, brain tumours have been low on the list of priorities. As a result, patients and families are let down. For change to happen, there needs to be a strategic plan with joined-up thinking across the pathways of discovery, translational and clinical research. Government departments must start working together.
It is crucial for scientists in Scotland to be able to access further funding, including National Institute for Health and Care Research funding, to do their vital work. We must ensure that adequate research is being done to make advancements in brain tumour treatments. More investment in the treatment of brain tumours is urgently needed so that treatments can be developed and accelerated and the capacity of our medical research can be expanded.
I will say a few words about the importance of the horizon Europe programme for brain tumour research and the wider research community. The UK Government recently published an independent review of the country’s research and development landscape, which concluded that the horizon Europe association was essential. The review recommended that relationships with European Union partners be protected, maintained and expanded.
The free exchange of researchers, ideas and data with our closest research-intensive neighbours is vital for UK-wide research, development and innovation. It is vital that Scotland and the whole of the UK have full access to horizon Europe, which is the world’s largest collaborative research programme. If we have that, we can take great steps towards finding a cure for brain tumours.
18:28
It is a privilege to respond to the debate and give my first parliamentary speech as Minister for Public Health and Women’s Health. Joining the ministerial team is an honour, and I look forward to working with stakeholders from across the portfolio, including members.
I thank Emma Harper for bringing the motion to the chamber and I thank all the colleagues who have made such valuable contributions, highlighting the importance of brain tumour awareness month and sharing some personal stories.
I, too, welcome to the public gallery members of Brain Tumour Research and Alan Johnstone, whom Emma Harper mentioned. I give him my heartfelt thanks for the selfless work that he has done to raise funds and, importantly, awareness of brain tumours after the tragic loss of his wife, Anneka.
I have brought a hat with me today. I promise that I will not wear it, but I hope that the Presiding Officer will indulge me with this prop. The hat is from Calum’s Cabin, which is an inspirational charity on the Isle of Bute, in my constituency. The charity was set up by an inspirational family to support children who are undergoing cancer treatment and their families. That touches on some of the points that Paul Sweeney made in his speech.
Calum Speirs passed away from an inoperable brain tumour on 16 February 2007. His parents, Duncan and Caroline, and his twin sister Jenna started fundraising to fulfil Calum’s dream to offer family holidays to children like him on his beloved Isle of Bute. Calum’s Cabin now has holiday homes in three locations across Scotland, where families can go and spend quality family time together, making irreplaceable memories and recharging their batteries. There are also nine flats in Glasgow, where families who have to spend a long time away from home when a child is enduring longer-term treatment at Glasgow’s children’s hospitals can stay. The charity offers a home away from home for families who are faced with such uncertainty.
I compliment every member who contributed to the debate. Having the opportunity to talk about the importance of subjects such as brain tumour cancer is one of the privileges of being an elected MSP. David Torrance spoke about the need to take account of people’s experiences. Sandesh Gulhane mentioned research and Heather’s campaign. Paul Sweeney talked about the centre of excellence and research. Beatrice Wishart raised awareness through her powerful personal story. Jackie Dunbar spoke about the importance of early diagnosis, and Foysol Choudhury mentioned the importance of research.
As others have said, survival rates for some cancers have improved at a much slower rate than those for other cancers. For brain cancer, the difficult fact is that the five-year age-standardised survival rate cannot be robustly estimated because the patient cohort is simply too small. For other, more survivable cancers, the average five-year survival rate is 69 per cent.
We know that the earlier cancer is diagnosed, the easier it is to treat. That is why we continue to invest in our detect cancer early programme, which takes a whole-systems approach to early detection that encompasses public awareness, primary care, screening, diagnostics and data. Since its launch, positive shifts have been noted but, as others have mentioned, the pandemic has impacted on its progress.
Diagnosing brain cancer can be challenging as the symptoms are wide ranging and they can often be vague, as Dr Gulhane mentioned. Work is under way to update our get checked early website with content on brain cancer in order to ensure that possible symptoms are highlighted and the public are reassured on next steps. In addition, in March, we launched a new public awareness campaign—“Be the Early Bird”—with the aim of reducing fear of cancer and empowering people with possible symptoms to act early.
We are also working to improve the pathways for patients once they have taken the all-important step of contacting their GP. In 2018, the detect cancer early programme funded a clinical refresh of eight pathways, including brain cancer, in the “Scottish Referral Guidelines for Suspected Cancer”. The revised guidance that was published in January 2019 supports primary care clinicians in ensuring that people with suspected symptoms of cancer are put on the right pathway at the right time.
More recently, we have established Scotland’s first rapid cancer diagnostic services within existing NHS infrastructure. The first centres, which are operational in NHS Ayrshire and Arran, NHS Dumfries and Galloway and NHS Fife, provide access to a new fast-track referral pathway for patients with non-specific symptoms suspicious of cancer. Two further services in NHS Lanarkshire and NHS Borders will be fully operational by June 2023, supported by more than £600,000 of investment. My colleague Jackie Dunbar mentioned NHS Grampian, which has not submitted a proposal. However, it is working on a regional proposal, which we expect to see in the current financial year.
In collaboration with health professionals and patients, the Scottish cancer network is developing new national clinical management pathways that set out best practice for a cancer patient’s care. Initially, three new CMPs have been developed and, given our focus on less survivable cancers, one of those is for neurological cancers, including brain cancer.
In addition to the work that is already under way, colleagues will be aware that we are developing a new, ambitious 10-year cancer strategy that is to be launched shortly. The new strategy will continue to focus on those cancer types that have the poorest survival rates. It will take a comprehensive approach to improving patient pathways from prevention and diagnosis through to treatment and post-treatment care. Its vision will be supported by a three-year action plan and it will include a commitment to clinically refresh the referral guidelines, including those for brain cancer, and explore the role of decision-making support tools in enabling early identification and appropriate onward referral.
I welcome the minister to her new role in the Scottish Government. I would like to follow up on her point about investment, particularly in relation to the institute of neurological sciences in Glasgow, which is an ageing facility that has long needed replacement. Could there be an opportunity to build on the investment, particularly for brain tumour research activities, so that the institute can be built on as another UK centre of excellence in the field?
I thank Paul Sweeney for his kind words and his intervention. I would be happy to meet him after the debate to discuss the matter and see whether we can make any progress.
Work to develop a new earlier cancer diagnosis vision in Scotland that will outline the future of the detect cancer early programme is also nearing completion. That vision will form part of the new cancer strategy. Although it will focus on reducing later stage disease, it acknowledges that not all cancers—including brain cancer—have a formal staging system. Additional measures will be considered to monitor progress and improvement in those areas, including diagnoses via emergency presentations. We will continue to work with the less survivable cancers task force, of which the Brain Tumour Charity is a member, to develop practical and impactful actions to support the increased detection of those cancers.
This April is also the first teenage and young adult cancer awareness month. We know that, from 2010 to 2019, just over a quarter of the children and young people who were diagnosed with cancer had a cancer of the brain and/or central nervous system. A cancer diagnosis is indescribably difficult for young people and their families to go through. We are committed to making sure that the necessary support for physical and mental health is available to all who need it, when they need it. That is why the managed service network for children and young people with cancer was established. The Scottish Government is committed to improving services nationally and to supporting a consistent approach to care and treatment across the country.
I reiterate to members and those who are watching the debate the Scottish Government’s enduring commitment to diagnosing brain tumours earlier for children, young people and adults. I thank all those who give their energy tirelessly to raise awareness of brain tumours and do the work that we know must continue to be done to improve survival rates. People can find out more about the symptoms of brain cancer by visiting the NHS inform website. If you or anyone you know are worried about symptoms, please contact your local primary care service for help and advice. Together, we can close the deadly cancer gap and ensure that Scotland continues to lead progress for less survivable cancers.
Meeting closed at 18:38.Air ais
Decision Time