Meeting of the Parliament

Meeting date: Thursday, December 7, 2017

Official Report 944KB pdf

---

Brain Tumour Awareness

The next item of business is a members’ business debate on motion S5M-07735, in the name of Alexander Stewart, on brain tumour awareness in Scotland. The debate will be concluded without any question being put.

Motion moved,

That the Parliament understands that brain tumours are the biggest cancer killer of children and adults under the age of 40 in Scotland, reducing life expectancy by 20 years on average; believes that this is the highest of any cancer, but that the treatment for 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 quality of life; understands that 37% of patients with brain tumours in Scotland went straight to hospital for diagnosis, compared to 9% of all cancer patients in 2016, according to the Scottish Cancer Patient Experience Survey; notes the experience of Mark Richardson from Dunfermline who died suddenly of an undiagnosed brain tumour in May 2016 aged just 32; believes that there are myriad forms and over 130 different brain tumour types; further believes that some symptoms of brain tumour can mimic other equally serious conditions that often render early diagnosis and treatment more difficult in some cases; understands that brain tumour charities are working hard to fund pioneering research, raise awareness of the signs and symptoms of brain tumours, and provide support to those affected; commends the success of national campaigns, which it considers have contributed to a reduction in the average diagnosis times 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, and notes the encouragement of fundraising initiatives with the focus of delivering better outcomes for brain tumour patients.

12:48  

I am delighted and grateful to have the opportunity to lead this members’ business debate on brain tumour awareness. In order to set the stage and explain briefly why I feel strongly that something more must be done to increase the awareness of brain tumours, it is appropriate for me to highlight some of the salient issues.

Brain tumours are the largest killer by cancer of children and adults under the age of 40 in the United Kingdom. Brain tumours reduce life expectancy by an average of 20 years, which is the highest figure for any cancer that we currently know of. In 2014, 971 people in Scotland were diagnosed with a primary brain tumour, with a total of 475 people in Scotland dying from the disease in 2015. A full 60 per cent of people 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.

About a year ago, I heard about a tragic situation in my region. Mark Richardson lived in Dunfermline; he was a father of two, with an older stepson, and husband to Shona. Shona has kindly agreed to join us in the public gallery, and I pay tribute to her for having gone through such a harrowing situation, for the tenacity that she has shown and for the work that she has done to support others in a similar situation.

In May 2016, at the age of 32, Mark, a highly popular manager with Diageo, was suddenly and tragically struck down by an undiagnosed brain tumour the size of a golf ball—Shona found him collapsed in their Dunfermline home. It came to light that Mark had been afflicted with extreme tiredness, which Shona had put down to his demanding job and having to deal with two lively children. He had also been suffering from neck pain and, prior to his death, had had a bleed on his eye, although even an eye test had found nothing.

After Mark’s passing, Shona, their friends and Mark’s Diageo colleagues decided to have a dinner in tribute to him. The event raised tens of thousands of pounds, which was matched by Diageo. In total, £62,000 was raised for the Brain Tumour Charity and, to date, more than £80,000 has been raised in Mark’s memory as a result of events that Shona and the family have put together. For example, there was a climb up Ben Nevis in September, with 30 of Mark’s family and friends; and, only a month ago, Shona organised a charity walk around Loch Leven of between 2.5km and 20km—depending on what people could manage and how much they had been exercising—on which she was accompanied by her sons and 50 of her family members and friends.

Brain tumours are a cancer of unmet need. The investment needed in research to improve diagnosis and to find more effective and less harmful treatments—and, ultimately, a cure—has been woefully insufficient in past decades. I acknowledge the work of Cancer Research UK on the matter, but the fact is that progress across the various sectors has not been equal. The five-year survival rate for brain tumour patients is less than 20 per cent, yet in 2016 less than 2 per cent of cancer research funding was spent on such tumours.

On 29 October, a $100 million fund to beat brain tumours was launched in Australia, a move due in no small part due to the Cure Brain Cancer Foundation, which worked hard with the Australian Government to secure the funding. That encouraging announcement came at the same time as the United Kingdom Brain Tumour Charity is right in the middle of a five-year planning strategy to invest £20 million in research centres across the world in Germany, the Netherlands and, indeed, Australia.

I firmly believe that Scotland can comfortably follow Australia’s lead, and I suggest that we work together with all the third-sector funders of brain tumour research across the world to combat this disease. The Scottish Government should work closely with brain tumour charities to look at all the research that has been carried out. Many people in Scotland have added to that, and I pay tribute to individuals such as Dr Paul Brennan from the University of Edinburgh, who has been researching the pathway to adult diagnosis. The ultimate goal here should be increased awareness of adult brain tumours in Scotland.

The most important issue in all of this is the patient experience, which has to improve, the goal being to give everyone equal access to treatment and care. The Scottish Government must ensure that brain tumour patients have access to clinical nurse specialists or key workers to ensure that all their holistic requirements following diagnosis are assessed, with signposts in place for patients to access local support. Patients who have a brain tumour should also have the opportunity to discuss palliative care with consultants at the point of diagnosis.

I pay tribute to all those who have lived with or supported individuals with a brain tumour and acknowledge the devastating effects on their lives and the lives of their families. I also urge the Scottish Government, the Brain Tumour Charity and health professionals to work together to support and protect people on this journey; indeed, we need a public awareness campaign to educate us, give us information and ensure that we understand what we are dealing with.

I pledge that I will do all that I can in this Parliament to fight the corner for awareness of this devastating disease. We need action, not words. We need commitment from Government. If we can work together, we can achieve together, to support patients and their families.

12:55  

I refer members to my entry in the register of members’ interests. I am a registered mental health nurse who holds an honorary contract with NHS Greater Glasgow and Clyde.

I thank Alexander Stewart for bringing this important debate to the chamber today. It is welcome that people are now increasingly aware of brain tumours and of the devastating effects that they often bring, but I am sure that we all agree that we can certainly go further.

Over the past two decades, a number of high-profile public figures have been diagnosed with the condition, which in turn has propelled it into the mainstream. In the music world, we witnessed Russell Watson’s brave fights over the years with two pituitary tumours. In sport, people followed John Hartson’s journey in overcoming both a brain tumour and testicular cancer. In the world of politics, we sadly lost the late Mo Mowlam, who suffered from a malignant tumour prior to her death 12 years ago.

Improvements in the prevention, detection and treatment of cancers have seen survival rates double over the past 40 years, but progress has sadly not advanced equally for all forms of the disease. Brain tumours are often perceived to be a rare condition. However, around 10,600 people in the United Kingdom are diagnosed each year and it is our ninth most common cancer. In 2014, more than 800 people in Scotland alone were diagnosed with a brain tumour. As Alexander Stewart has said, although brain tumours are less common than other types of cancer, brain tumours are the biggest cancer killer of children and of people under 40 in the UK.

Depending on where the tumour is found and on the rate of its growth, brain tumours cause a range of different symptoms. Common signs include headaches, sickness and vomiting, and people can be prone to having seizures. Sufferers might see changes to their senses, particularly their hearing and sight, and people’s behaviour can change. I hope that the debate will not only raise awareness and increase people’s understanding of the effects and symptoms of having a brain tumour themselves, but will also help them to pick up on such changes in others.

Only one in five people with a brain tumour will survive five years, but even more devastating is that 60 per cent of people will die within one year. As well as the low survival rate, 60 per cent of younger people will be left with a significant disability. Unlike many other forms of cancer, such as breast cancer, a benign brain tumour can be equally as devastating as a malignant one. Due to the growth being positioned on the brain, removing even a benign lesion can have a huge and persistent impact on the person. One in four people with a tumour will have sensory loss or will lose cognitive function, one in three will experience changes in personality and behaviour, and one in two will find their memory impacted. For those who survive brain tumours, many will be heavily affected and might have a poorer quality of life.

I am grateful that Clare Haughey brings her expertise to the chamber today. It has been useful in understanding some of the issues. In the circumstances that she describes, is it welcome that the Scottish Government is bringing forward a neurological action plan, which could begin to address some of the issues that she is laying out in her excellent speech?

I absolutely support the Scottish Government’s action on that. The Scottish Government, through its “Beating Cancer: Ambition and Action” strategy and the accompanying £100 million investment over five years, has provided a blueprint for the future of cancer services in Scotland. It will improve the prevention, detection, diagnosis, treatment, aftercare and, ultimately, survival, of people affected by cancer. The £100 million strategy will include £50 million for radiotherapy equipment and to support radiotherapy recruitment and training, £9 million over five years to ensure better support for people with cancer and their families—for example, through link workers—and £5 million to support waiting times and performance. In addition to that, the Scottish Government has invested £41 million in the detect cancer early programme, which is targeted at those living in the most deprived areas. The Scottish Government’s continued focus on early diagnosis is absolutely vital and will make a positive difference.

Cancer services have come a long way in the past few decades, but there is much more to be done to reduce mortality rates. Being diagnosed with a brain tumour can be an overwhelming prospect for those affected and their families, so it is vital that we support them from detection right through to aftercare.

13:00  

I, too, thank Alexander Stewart for the chance to debate this topic in the chamber.

At the end of every day that I have the privilege to serve in this Parliament, I know that I will go home having learned new facts and figures. Some remain just that—facts and figures—but some of what I learn becomes ideas that I am driven to support, to see whether I can build on them for the benefit of those I represent.

This topic falls in the latter group. I knew little about brain tumours before I was elected—I had not come into contact with this form of cancer. Little did I know that brain tumours are in the cancer group that is the biggest cause of mortality in children and adults under 40.

Sadly, the treatment of brain tumours is about 20 years behind the treatment of other cancers. There are 130 types of brain tumour, which makes diagnosis difficult, and sometimes the symptoms are mistaken for other serous conditions, which delays treatment.

I am speaking in the debate to highlight early diagnosis of brain tumours and to try to ensure that that leads to early treatment. My reason for wanting to do so is simple. Not long after I was elected to this Parliament in 2016, I was contacted by the parents of a boy called Robert, a piper and a biker, who lived in the Highlands and had been diagnosed with a brain tumour. His parents were doing all that they could and needed a little bit of help to get Robert some additional specialist support. I met them and Robert and, over the next few months, we worked together to take forward his treatment. Sadly, in 2017, despite the support of doctors, Robert lost his fight.

I mention that story because of the importance of early diagnosis. Robert’s family were initially concerned when he struggled with his piping, and they took him to his doctor. The doctor moved quickly and Robert was diagnosed quickly, but that is not the case for all children. Although the time taken to make a diagnosis has dropped from nine to six weeks, we need to do more to ensure that that drops further.

Clare Haughey has mentioned the symptoms of brain tumours. I will mention them again, because doing so sheds light on the condition. In babies, we should be looking for persistent vomiting, lack of balance, abnormal eye movements, lethargy, abnormal head position and, sometimes, fits and seizures. In children, the symptoms can also include problems with walking and co-ordination and double vision. In teens, additional symptoms can include delayed or arrested puberty and abnormal growth.

Ever since I met Robert, I have taken a keen interest in two charities. The first is the UK-based Brain Tumour Charity, with which I hope to promote early diagnosis in this parliamentary session. The second is a charity called HeadSmart. I encourage all those who get the chance to visit HeadSmart’s website and to look at the stories section, which has nine stories of children who have suffered with brain tumours. They all make clear the importance of early and accurate diagnosis, and that is what we should take home from this debate.

I say to all parents that if they recognise any of the symptoms that I have mentioned in their child, they should take them to the doctor. I say to doctors that if they see any of those symptoms, they should not ignore brain tumours as a possible cause. I say to the Scottish Government that it should do all that it can to increase knowledge of brain tumours. I hope that if we do that as a result of this debate, that will be a fitting tribute to Robert.

13:04  

I, too, add my thanks to Alexander Stewart for lodging his motion and allowing members the opportunity to discuss how best to make progress on the detection and the treatment of brain tumours and to pay tribute to the memory of all those affected by this cancer.

Brain tumours may be the ninth most common cancer in the UK but, as Cancer Research UK and the Brain Tumour Charity highlight, it is one of four cancers of unmet need due to the poor survival rate and the all too limited improvements in the past decade. Tragically, 60 per cent of people who are diagnosed with high-grade brain tumours die within a year, and only 19 per cent will survive for five years or more. As Alexander Stewart and Edward Mountain noted, behind the statistics are real people, real lives and real families who are tragically affected.

The number of people who are affected is on the rise, with brain tumour incidents in Scotland increasing by 16 per cent from 2005 to 2015. Over the same period, the number of deaths as a result of brain tumours has increased by 14 per cent. Although mortality is increasing at a slower rate than incidents, progress remains far too slow. Ensuring that brain tumours are detected and treated as quickly as possible is crucial to improving progress in the detection and treatment of tumours. However, we know that it can be incredibly difficult for those with tumours and for medical professionals to identify tumours. The symptoms of brain tumours are wide ranging and non-specific and can vary depending on where in the brain the tumour occurs. In fact, 31 per cent of those with brain and central nervous system tumours visit a healthcare professional more than five times before being diagnosed, and 37 per cent of diagnoses occur after an emergency admission, compared with an average of 9 per cent across all cancer patients.

However, as the motion notes, there has been some progress. Since 2011, the average diagnosis time for childhood brain tumours in the UK has decreased from 9.1 weeks to 6.5 weeks. Here we can see the positive impact that targeted efforts to improve early detection and raise awareness can have. It is vital that that work continues to improve the recognition and understanding of symptoms in order to further reduce diagnostic time for children and adults alike.

We also need to ensure that primary care services in communities are accessible and adequately resourced. As a common first point of contact in our healthcare system, primary care has a vital role to play in providing early detection, but difficulty in accessing those services adds an additional barrier to treatment. That is particularly true in the case of people with general and seemingly non-urgent symptoms, which are common among those with brain tumours.

As well as improving diagnosis of brain tumours, there remains a need to improve our knowledge and achievement capabilities through research, which all speakers so far have highlighted. Across the UK, brain tumours are the biggest cancer killers of children and adults under the age of 40, yet, in 2016, less than 2 per cent of cancer research funding was spent researching brain tumours. Pioneering work on the subject is taking place across the world and technological innovations are constantly creating opportunities to transform how we diagnose and treat brain tumours. That important work is being done in several Scottish universities. Dr Nick Leslie at Heriot-Watt University is exploring the potential uses of 3D printing in brain tumour models; Dr Paul Brennan at the University of Edinburgh is working to understand how brain tumours progress and to establish why some adults take longer than others to be diagnosed; and, at the Edinburgh Cancer Research UK centre, a number of teams are working to better understand brain tumours and develop potential new treatments. We must do all that we can to ensure that that vital work has the support and funding that it needs.

It is also important to recognise the role that social care can play in delivering care for those who have or have had brain tumours. The Scottish cancer patient experience survey found that the proportion of people with brain tumours who were offered a care package was the second lowest of any cancer type, at just one in five. In palliative care, the situation is equally lacking, with research by the Brain Tumour Charity finding that the majority of people with a terminal brain tumour diagnosis were not given a choice of end-of-life care options and that almost half felt that they had not been given appropriate information about end-of-life care.

It is clear that much more still needs to be done in detection, treatment and care to tackle this cancer, which many argue has not had a high enough priority.

13:08  

I congratulate Alexander Stewart on securing the debate and welcome the opportunity to make a brief contribution to it. I apologise for the fact that, because the Justice Sub-committee on Policing is taking place right now—Calum Steele and I have some catching up to do following yesterday’s debate on policing—I will have to leave this debate slightly early. However, I will certainly read with interest in the Official Report the speeches that are made during the rest of the debate.

As others have said, this is an important issue. I, too, pay tribute to the work of Cancer Research UK, which has highlighted brain cancer and supported research into the causes and into how it can be treated more effectively.

As others have said, over the past 40 years welcome improvements have been made in prevention, detection and treatment that have revolutionised cancer medicine and survival rates, but progress has not been consistent across the piece. Brain cancer is one of the four cancers of unmet need that have rightly been identified by Cancer Research UK. As has been mentioned, those cancers have poor five-year survival rates, in which very limited improvement has been made over the past decade, and Cancer Research UK is right to prioritise improvement of the quality and the quantity of research into them. That is certainly the view of those who are involved in the Friends of the Neuro Ward Aberdeen Royal Infirmary, who deserve our gratitude and support, as do the campaigners whom colleagues have already mentioned. I pay tribute to Caroline Critchlow and Carolyn Toshney, in particular, but they are well supported by other volunteers in the group. Over the years, they have done incredible work, not only in raising money for the neuro ward in Aberdeen but in raising the profile of the issue that we are debating.

Caroline Critchlow is in no doubt that the main issue is that diagnosis is still being made far too late. There are many different brain tumours and, as Clare Haughey outlined, their symptoms are easily confused with those of other conditions, as the tragic case that Alexander Stewart referred to illustrated. There seems to be a reluctance, for whatever reason, to refer people for MRI scans. As a result, too often people are presenting at accident and emergency departments, by which stage it is invariably far too late.

In turn, that puts pressure on neuro wards, which tend to be underfunded because of the wide-ranging nature of the referrals that they receive, which include cases of head injury, spinal tumour, MS, motor neurone disease and Parkinson’s. The neuro wards do not appear to be benefiting from the funding that supports all those diseases.

I am told that the new Glasgow hospital does not include a neuro ward, and I would be interested to know the reasons for that decision.

I have a point of clarification. There is a neuro department at that hospital.

That was helpful—it is encouraging to know that.

The underlying problem is that not enough is known about brain tumours. Only 1 per cent of cancer research funding is spent in this area and, in real terms, the amount that is spent has gone down rather than up. That is tragic and rather inexplicable when, as we know, brain tumours are the biggest cancer killer of children and adults under the age of 40.

More research, earlier diagnosis and greater awareness are needed. I thank Alexander Stewart for helping at least with the last of those, and I hope that much more progress will be made on the first two.

I again apologise to Alexander Stewart, the minister and others for leaving the chamber shortly in order to attend a committee meeting.

It is fine if you want to leave now; the Justice Sub-committee on Policing is sitting.

To allow me to call all the other members who wish to speak in the debate, I am minded to accept a motion without notice, under rule 8.14.3, to extend the debate by up to 30 minutes.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Alexander Stewart]

Motion agreed to.

13:13  

I congratulate Alexander Stewart on bringing this important debate to the chamber. I must remind members that I am a registered nurse. The operating theatre was one of the areas of clinical practice in which I gained experience. The debate is about raising awareness of brain tumour and the effects that the signs and symptoms, diagnosis and treatment have on not only the patients but the families of those who are affected.

While researching for the debate, I was reminded of terms such as glioma, glioblastoma, astrocytoma stage 1 and stage 2, stereotactic biopsy, chemotherapy and radiotherapy. All those terms are part of the language that is used in caring for people with brain tumours. I acknowledge that, as the motion says, there are more than 130 types of brain cancer.

In 2003, while working at Cedars-Sinai Medical Center in Los Angeles, I was able to participate in the form of tumour removal surgery that is called awake craniotomy. Sometimes a tumour is in an area of the cerebrum where the speech centre is located. Preserving speech following surgery is an obvious optimal goal, and that can be achieved by using the specialist technique of awake craniotomy. I was reminded of my participation in that work when I read the motion and did my research for today’s debate.

In 2014, 971 people in Scotland were diagnosed with a brain tumour, and in 2015, about 475 people died as the result of a tumour in the brain. I, too, pay tribute to the people, families and lives affected by brain cancer. One of the most important factors in the successful treatment of a brain tumour is early diagnosis, and I am going to focus my time on that.

Last year, I was contacted by the HeadSmart campaign and asked to help to raise awareness of the HeadSmart programme, which has already been mentioned by my colleague Edward Mountain, using my social media contacts. HeadSmart is an internet-based programme that helps by providing education about the symptoms of brain tumour, which can lead to an earlier diagnosis, especially in children.

According to the Brain Tumour Charity, 10 to 15 per cent of childhood brain tumours in the United Kingdom are high-grade astrocytoma called diffuse intrinsic pontine glioma, or DIPG. That is a fast-growing tumour originating in the brain stem and it often appears in children who are only six years old. In children, teenagers and young folks, the symptoms may go undiagnosed until they become more problematic, because adults may think that some of the symptoms are part of growing up. One description was of a young teacher who forgot her pupils’ names and whose text messages became garbled; later she was diagnosed with a brain tumour, so the garbled text messages and forgotten names were actually associated symptoms. When individual symptoms are connected, action can be taken.

The HeadSmart site describes symptoms as persistent or recurrent vomiting; persistent or recurring headache; abnormal eye movements; and blurred or double vision. The abnormal eye movement, for example, could be the appearance of a new squint, bulging eye or other eye problems. Other symptoms are problems with hearing and loss of balance or co-ordination—some of the children described wobbly legs—and fits or seizures are also symptoms.

The HeadSmart decision-support tool for healthcare professionals on the internet site gives guidance on when to reassure, review or refer and it will lead to a neurological examination, computer tomography or magnetic resonance imaging scan as part of the clinical pathway for diagnosis and treatment. Much is involved in the care, treatment and family support needed for people with brain tumours, but recognition and diagnosis at the earliest opportunity is one of the most important aspects of getting the right support and care. The impact of the HeadSmart campaign is that childhood diagnosis time is reduced from 14.4 to 6.5 weeks. That is a great achievement.

I conclude by once again welcoming the debate and reiterating the importance of raising awareness of cancer of the brain, and I thank Alexander Stewart again for securing the debate.

13:17  

I thank Alexander Stewart for bringing an important motion to the chamber. As we have heard, brain tumours unfortunately impact families and communities the length and breadth of Scotland.

Today’s debate was highlighted for me by a constituent who got in touch to share the story of how he tragically lost his son last year to a brain tumour. Two more of my young constituents—Luke Stewart from Tranent and Alex Logan from Prestonpans—have recently been diagnosed with an extremely rare form of malignant tumour known as DIPG, which is extremely difficult to treat. That form of brain tumour affects only 20 to 30 children a year in the UK, but we have two cases diagnosed within a few miles of each other.

The local communities have rallied round Luke and Alex. Luke was told by the national health service that it could provide only radiotherapy to give him a semblance of good quality of life. He is now receiving treatments in Mexico, after hundreds of thousands of pounds were raised to fund a new treatment, which he is only the seventh patient in the world to receive. The family reports that the benefits have been significant—but how hard they have had to fight to get them.

Alex’s family are now fundraising too, and once again their friends and neighbours are stepping up to the plate—not least Prestonpans boxing superstar, Josh Taylor, who dedicated his recent defence of his World Boxing Council silver super-lightweight title to Alex and his campaign, in front of a television audience of millions.

Although it is welcome that Luke now has access to the treatment that he needs, and I know that Prestonpans will not let Alex Logan down, we have to put our hands up and say that we are letting them and their families down. They should not have to depend on fundraising to get the treatment that they need and that can help them, and they should not have to travel to Mexico to find that treatment.

As we have already heard, over the past 10 years in Scotland, survival rates for brain tumours have shown little improvement. They kill more people than leukaemia in Scotland, and deaths have increased by over 15 per cent in the past 15 years. Brain tumours kill more children and adults under the age of 40 than any other cancer, yet we have also heard that less than 2 per cent of cancer research spending in the UK is dedicated to work on brain tumours. That simply cannot be right. It is time that we did better for youngsters like Luke and Alex.

13:20  

I thank Alexander Stewart for bringing this important topic to the chamber today.

This debate is fundamentally about raising awareness of the signs and symptoms of brain tumours. The importance of doing so cannot be overstated: it really is a matter of life and death. I am sure that I was not alone in being shocked by some of the statistics and stories that I read in preparation for the debate. For example, nearly one third of people visit a healthcare professional more than five times before being diagnosed, and 37 per cent of patients with brain tumours in Scotland went straight to hospital for diagnosis, compared with 9 per cent of all cancer patients in 2016. That is because of a lack of understanding among both the general public and healthcare professionals, which means that such tumours often go unidentified and undiagnosed for a long time. When they are finally diagnosed, it is often too late to treat them effectively, with the result that the patient deteriorates quickly and dies rapidly.

That can—and must—be improved. By raising awareness, it can be. That has been proved beyond doubt by the UK-wide campaign HeadSmart, which has radically improved average diagnosis times for children and young people. Based on the “Diagnosis of Brain Tumours in Children” guidance that was produced in 2008, HeadSmart is a public-facing campaign that focuses on raising awareness of the signs and symptoms of brain tumours in children and young people.

Through educating both the public and healthcare professionals, the campaign has succeeded in saving countless lives and in markedly reducing long-term disabilities. Before 2008, average diagnosis time for children with brain tumours in the UK was 13 weeks. Four years after publication of the guidance for healthcare professionals, that was reduced and, most recently, average diagnosis times have been further reduced to 6.5 weeks. The goal is now to get the average diagnosis time down to four weeks. So far, the campaign has demonstrated how much of a difference can be made simply by raising awareness. I am confident that we can, if we continue to do that, achieve that goal for children and young people, as well as for adults.

As well as raising awareness of what we currently know, another crucial strand in dealing better with brain tumours is new research. I was pleased to read about the pioneering research projects that are currently under way in Scotland, at the University of Edinburgh and Heriot-Watt University. I hope that the Scottish Government will in due course capitalise on those research findings, in addition to the action that it is already taking, including the “Scottish Cancer Patient Experience Survey 2015/16”—the first such survey—that it published in partnership with Macmillan Cancer Support in 2016. The findings of that survey highlighted good practice as well as areas for improvement.

Responding to that report in September this year, the Cabinet Secretary for Health and Sport announced the formation of a ministerial cancer performance delivery group to drive forward improvements in waiting times for diagnosis and treatment of cancer patients, supported by £1 million of new funding. An additional £3 million was announced to increase the number of radiology trainees in Scotland by at least 50 over the next five years. That investment, plus more national awareness raising, will continue to focus our minds on further improving outcomes for brain tumour patients, whose diagnosis and treatment still lag behind those of other cancer patients, which can and must be improved.

13:24  

I, too, thank Alexander Stewart for bringing the debate this afternoon.

I welcome some of my constituents to the chamber for the debate. I have been contacted by a number of constituents who are living with brain tumour diagnoses and whose stories have been very effective in highlighting the challenges that people face when fighting the condition and trying to get on with living their lives.

I would also like to thank the Brain Tumour Charity and Cancer Research Scotland for their briefings in advance of the debate. Alexander Stewart highlighted the key issues around the experiences of people, the health and emotional impacts, difficulties with diagnosis and lack of awareness of the condition.

I was struck by two issues following the briefings. The first is the stress on individuals while trying to achieve a diagnosis. One third of diagnoses result from emergency admissions to hospital, and 31 per cent of patients have to visit their GP at least five times before a diagnosis can be made. I acknowledge the difficulty in trying to diagnose the condition, as highlighted by other members, because it can present similarly to other conditions. It is relatively uncommon for a GP to come across the cancer, so I understand the difficulties with diagnosis. However, that must be extremely frustrating for the person who is awaiting diagnosis, and for their families.

As others have said, brain tumours are a cancer of unmet need. Investment has been inadequate in addressing the key issues around improving diagnosis, finding more effective and less harmful treatments and, ultimately, finding a cure. The briefings, and other members, emphasised the importance of research. It can make a meaningful difference to people: the work of Dr Paul Brennan and Dr Dirk Sieger, who is looking at enabling faster development of drugs to treat tumours, was highlighted. There are examples of treatment being difficult for patients to tolerate, so there could be improvements in patient care.

The second issue that struck me is the patient experience. Models of care for other cancers could be replicated for brain tumour treatment. We have clinical nurse specialists in other areas and we know the benefits that they provide. They are vital in supporting patients. It is often recognised that the experience that patients have in clinical care is excellent, which is important. However, when that engagement finishes, patients often feel abandoned. They must deal with the shock and stress of receiving the diagnosis, and sometimes cannot remember the answer to questions that they asked. They often have many unanswered questions following a brief meeting with the consultant. They also face significant changes in how they live their lives. At that point, a clinical nurse specialist could provide valuable support and signposting.

A brain tumour is the most prevalent and life-shortening cancer for children and adults under the age of 40, which must make diagnosis extremely concerning. I will highlight emails that I have had from constituents.

Michelle was diagnosed with a brain tumour just over a year ago, when she was only 25. She says that her whole life has changed due to the symptoms that come with this horrible disease. She had to give up her job and her college course because she was so ill. She is only 26 and feels that she has no life anymore because of the diagnosis. It has physically and mentally taken over her life. Because the cancer affects that age group, we are not as experienced in how to deal with supporting patients, so we need to focus on that.

The disease impacts significantly on people’s home lives. Parents can have young children who are affected. I was contacted by Elizabeth, whose husband has been diagnosed with a brain tumour. She and her husband both work, and they do not claim state benefits, but they were trying to access early nursery care for their young daughter following his diagnosis. They feel that the situation that they are facing should have made it easier for them to qualify. They were unable to pay for child care, but were both in work and not claiming benefits, so that affected the answer that they were given about how to deal with the situation. Their situation has been resolved, but that example illustrates the challenges that families with this diagnosis who are trying to look after young children face.

It is an extremely stressful time for patients, and the statistics demonstrate that they do not often have the support that they need. They often do not have the understanding of their employers or agencies, which suggests a lack of understanding about the impacts of the condition. All of that is reflected in the emails that I have received.

Finally, I will mention Ewan, who contacted me to say that another key interest, for him, is the nature and provision of support post-operation. The impact on families and their patients is enormous and the challenges last a lifetime—especially the mental health and wellbeing aspects, and we must also pay attention to those.

13:29  

I, like other members, thank Alexander Stewart for securing this debate. I appreciate all the contributions that members have made this afternoon, but I pick out particularly the professional and authoritative contributions from Clare Haughey and Emma Harper.

The Scottish Government recognises the damaging impact of all cancers, including brain cancer, on individuals, their families and friends. Brain cancer has a devastating impact on younger people, as it is the biggest cause of cancer-related deaths in those aged 40 or under.

I pay tribute to Mark Richardson, who is mentioned in the motion, and welcome Shona to the chamber. I recognise the tremendous effort to raise an enormous amount of money in memory of Mark and I reiterate how sincerely sorry we are for his sad passing. Edward Mountain spoke about Robert, and it sounds like he was a wonderful and talented lad. It was important that Edward Mountain took the time during his remarks to raise awareness of all the signs, especially those that might be missed by parents.

I appreciate Iain Gray for raising the stories of Luke and Alex. We all wish them well, and I extend an offer to meet Iain Gray to find out about their cases and whether anything more could have been done, if that would help. Again, we probably all want to put on the record our hopes that both Alex and Luke get the recovery that we all want for them.

Clare Haughey mentioned the fact that it is not just constituents who have been impacted by brain tumours. Many notable people such as John Hartson and Mo Mowlam have also been affected.

I pay tribute to a teacher at a school in my constituency, Moira Struthers. She was an incredibly popular teacher who was heavily involved in the community. She volunteered, raised money and did all that she could to help anyone who was in need. Many constituents have contacted me about this debate, all of whom have echoed the calls that we have heard today about the need to raise awareness and for more research, and to make sure that Moira’s experience informs the way that we move forward.

What unites all the stories that we have heard today is the need to do more and to redouble our efforts around brain cancer and brain tumours.

I want to outline some of the national approaches that we are taking through our cancer strategy. In March 2016, the Scottish Government unveiled its “Beating Cancer: Ambition and Action” strategy document, which serves as a blueprint for the future of cancer services in Scotland. The Government is aware that early detection of all cancers, including brain cancer, is crucial. The strategy will deliver £100 million of investment to improve prevention, detection, diagnosis, treatment and aftercare for all those affected by cancer.

There is good work, but, as we have all acknowledged, the improvements in some areas of cancer have not been replicated in others, which shows that there is still much more to do. Our £41 million detect cancer early programme has increased diagnostic capacity across Scotland, as well as increasing awareness of the signs and symptoms of cancer. Next year’s programme will focus on early detection for all cancers. It will aim to encourage anyone with any concern or changes to their body to visit their GP.

On raising awareness of brain cancer, my officials met representatives of the Brain Tumour Charity and HeadSmart earlier in 2017 to share crucial information on signs and symptoms of brain tumours via our wee c social media channel. I have instructed my officials to meet colleagues from brain cancer charities to discuss how we can further support awareness messages and to consider research opportunities, which will build on Alexander Stewart’s request for charities, the third sector and Government to work together.

To improve cancer diagnosis, the Scottish Government has supported the Scottish referral guidelines for suspected cancer that were revised and published in 2014. They include a specific section on brain cancer and are intended to help clinicians to identify those people who are most likely to have cancer and require urgent specialist assessment. The guidelines are due to be reviewed and refreshed next year, and that will be assisted through engagement with those third sector organisations that have a particular and specific knowledge of brain tumours. That will enhance our ability to raise awareness and make sure that clinicians can identify the people who are most at risk and not be caught up in the fact that the symptoms can often mimic other conditions.

We all know that even where a diagnosis of brain cancer is made, the huge variance in site and tumour type can make treatment challenging. Clare Haughey was right to point to the impact that even a benign tumour can have.

I welcome the research funding in Edinburgh and Glasgow from the Brain Tumour Charity and the increased focus from Cancer Research UK on less survivable cancers, such as brain cancer. The centres are carrying out internationally leading research into many areas, such as diagnostic improvements, developmental biology, neuroregeneration and neural stem cell biology.

Researchers can also apply to the Scottish Government chief scientist office for funding; applications that are aimed at improving the diagnosis and treatment of brain cancer would be very welcome.

Ruth Maguire and Claire Baker talked about the importance of the patient experience. The first Scottish cancer patient experience survey was published in June 2017 and covered all aspects of the cancer care journey, from a person thinking that something might be wrong to the support that they receive after acute care and treatment. Although national results revealed that 94 per cent of people said that their overall experience of cancer care was positive, areas for improvement were noted. Particular concerns for people with brain tumours included the high number of emergency admissions, provision of care plans, access to information and access to clinical trials. The findings will assist with identifying where to target improvements. I hope that those improvements will be reflected in the next cancer patient experience survey.

I also hope that the suggestions that have been made in the debate will be taken on board. For instance, Claire Baker described the need for a broader package of support to be in place alongside the initial clinical interventions.

Members talked about the need for appropriate palliative and end-of-life care. The Brain Tumour Charity has highlighted the need to ensure that people with a brain tumour have the option of discussing palliative care with clinicians from the point of diagnosis.

I am pleased that Scotland has a very good reputation for palliative and end-of-life care. This year, the University of Bath institute for policy research published a policy note in which it commented that Scotland is taking bold steps to improve palliative and end-of-life care services and support.

We want to ensure that everyone has access to palliative and end-of-life care that is tailored to their individual needs. Our “Strategic Framework for Action on Palliative and End of Life Care” contains a number of commitments to improve services and support, to help to meet the needs of people and their families. If we are to achieve our aims, we must create the right conditions nationally to support local communities in their planning and delivery of those services. That ethos is at the heart of our health and social care integration agenda, and it is reassuring that we are beginning to see the positive outcomes of that agenda.

We must keep looking to improve how we deliver care. We must consider how we can equip ourselves to deliver even better health and social care services in future. The cancer strategy will assist, and it will require us to work collaboratively, with contributions from people who live with cancer, carers, voluntary groups, professionals and professional organisations and, of course, our dedicated NHS staff.

In memory of Mark Richardson, Moira Struthers, Robert, Michelle and all those who have been impacted by brain tumours, we must ensure that their experiences inform our actions. We must make improvements in areas such as life expectancy and the broader impact on families. There must be an increase in research, with the opportunities that it presents to make the improvements that I think that we all want to secure, in memory of everyone who has been mentioned in the debate.

I thank Alexander Stewart for taking the time to raise this important issue and I thank members for their speeches. I acknowledge that we want to do more to make the improvements that are so necessary.

13:39 Meeting suspended.  

14:30 On resuming—