Monday 18 April 2016
[Sir Edward Leigh in the Chair]
There are still people trying to get into this most important debate, and I am happy to allow everybody to come in and for people to stand at the back if they need to.
Before I call Helen Jones to move the motion, I should say that 30 colleagues have put their names in to speak, so I will be imposing a time limit soon—I know the mover of the motion will want to bear that in mind when she makes her speech. I should also say that those who want to make an intervention, but are also hoping to catch my eye to speak later, might consider that an unwise thing to do.
I beg to move,
That this House has considered e-petition 105560 relating to funding for research into brain tumours.
It is a great pleasure to be here under your chairmanship, Sir Edward, and to see so many colleagues present for this debate on funding for research into brain tumours, which was the subject of the first report by the new Petitions Committee.
We began this inquiry in response to a petition that was started by Maria Lester, whose brother, Stephen Realf, died following a brain tumour. It is fair to say—I think my colleagues would agree—that we began in a state of ignorance. We did not know a great deal about brain tumours or their impact, but, as we proceeded with the inquiry, we were humbled and shocked. We were humbled by the people who came forward to give evidence to us, whether in person, in writing or on the web; it is a measure of the interest in this topic that we received more than 1,100 posts on our web thread in 10 days. All those people had been either directly or indirectly affected by brain tumour and wanted to use their experience to improve other people’s chances. We were also shocked at the number of life years lost to this dreadful disease, the impact on children and the pitifully small amount of research funding devoted to it.
For that reason, we have made our report slightly different from some Select Committee reports; there are many individual stories in it and pictures of those affected. That is because we want to make it clear that this is not just a matter of statistics. Real lives, real people and real families are affected, and they are let down at almost every stage of the process, because, despite the excellent work of the doctors in this area, the system is underfunded and not properly structured, and has been so for years. That is our collective failure, because the neglect has gone on under different Governments, even though brain tumours are the biggest cause of cancers in children and in the under-40s. They account for between 15% and 25% of cancers in the under-25s and, if we look at the statistics overall for all age groups, we see that about 60% of cancers involve the brain at some stage, meaning that there has to be treatment for that if people are to recover. Because of the age groups that are generally affected, the number of life years lost to this cancer is greater than for any other cancer, and, of course, when children are involved, the situation is particularly tragic.
A number of parents came forward to tell us what had happened to their children. A number of those children suffered from a type of tumour called diffuse intrinsic pontine glioma, or DIPG, which is almost universally fatal. In this country, a child is diagnosed with one every nine days, yet few people have even heard of it. I suggest that, if they had, there would be much more pressure to increase funding for research in that area.
Those who survive, whether children or adults, face a huge burden from this disease. Many survive with serious disabilities, including physical disabilities or other things such as memory loss, personality change or cognitive disorders. Because of the huge burden of the disease, in terms of life years lost and significant disabilities among those who survive, we have made the recommendations that we have and we believe that it is time for a step change in how we deal with this most awful cancer.
That change has to begin, of course, with diagnosis, with which there are major difficulties. GPs may see only two or three cases in their professional lives, and in its early days brain tumour can mimic the symptoms of other diseases. However, 61% of people are diagnosed in A&E when they reach a crisis. We heard time and again from people who went back to their GP and went back to other doctors, often knowing that something was seriously wrong with them or with their child, but they were still not able to get a diagnosis. I suggest that we would not accept 60% being diagnosed in A&E for any other cancer and we should not be accepting it for this one.
Early diagnosis matters, because it affects the treatment options and the outcome. If we were able to diagnose people earlier, more would survive, especially among children, and there would be better outcomes for patients, with fewer survivors left with significant disabilities. That is why, I say to the Minister, we were concerned to note that the Government’s Be Clear on Cancer campaign did not include brain tumour. We understand that that is because the number of life years lost is not taken into account in deciding which cancers are included, and we believe that has to change.
There are important things happening. For example, the HeadSmart campaign, which seeks to raise awareness among GPs and lists the symptoms that can be seen in different age groups, has managed to improve the time taken between people presenting to their GP and diagnosis. Again, however, we are concerned that the guidelines issued by the National Institute for Health and Care Excellence in 2015 do not include lists of different symptoms for different age groups. We think that needs resolving.
Why does my hon. Friend think that NICE guidelines did not take that into account and include the information that we feel should be included?
We simply do not know the reason for that, but we think that the Government need to look at this as a matter of urgency and raise awareness among GPs as part of their continuing professional development programme. It is very important that they understand this, because if the disease was caught in its early stages, that would help future research. More people could take part in clinical trials and more could donate tissue in the early stages of the disease. Research is extraordinarily important, and I will come back to that in a minute.
We heard from a number of experts, including Professor Geoff Pilkington from the University of Portsmouth, about the questions that GPs should be asking when people present with particular symptoms—it is not always a headache, of course. There can be lots of different symptoms, such as an odd smell or a pain in the spine. There is a range of symptoms that people need to be alert to, but the only real way to diagnose a brain tumour is with a scan. Again, we heard from many people who had tried and tried to get a scan but were not able to do so.
I congratulate my hon. Friend on securing the debate. An important factor, which she has just mentioned, is the difficulty of getting scans. Why is that difficult? Is there a shortage of scanners or is there another reason?
Again, we were given various reasons when we took evidence, and we want the Government to consider the matter carefully. There is no doubt that if we are to improve scanning procedures, we must accept that a number of scans will come back clear. The issue is, what proportion that comes back with no tumour shown is acceptable? Surely it is better to invest in a scan than to let a tumour grow, because later treatment is much more difficult, complex and costly. We want more people to have access to scanning.
Early diagnosis is important, but it will not solve the problem without more research. Despite the excellent scientists and clinicians who gave evidence to the Committee, there is no doubt that they are working in an underfunded system. The Government response to the petition said that about 1.5% of cancer spending is devoted to brain tumours, but that includes fundamental research and non-site-specific research.
The National Cancer Research Institute told us in evidence that some non-site-specific research undoubtedly benefits brain tumour research, but it was unable to put a figure on that. We heard from Professor Tracy Warr of the brain tumour research centre at the University of Wolverhampton that brain tumours are less likely than other cancers to benefit from non-site-specific research because of their complexity and location, and the blood-brain barrier, which means that drugs that work in the bloodstream do not transfer to the brain. That is an unscientific explanation, but I am sure hon. Members will know what I mean.
We found that spending records are very unclear. The Government’s own records are not clear. The National Cancer Research Institute was unhelpful when trying to find out exactly how much of the spending benefited research into brain tumours and there is no central record of spending by people who are not partners with the National Cancer Research Institute. There is no doubt that spending is low. The only figure that we can be certain of is the 3.3% of spending on site-specific research, which is about £7.7 million a year. At that rate of progress, it is estimated that it would take 100 years for the outcome for brain tumours to be as good as for many other cancers.
Does the hon. Lady agree with the assessment of my constituent, Mrs Alison Hutchman, who has been living with what she calls “this devastating disease” for the last six years, about that estimated time of 100 years? Why is this terrible disease so low down the priority order?
I saw the recent death of my friend, Richard Webster, at the age of only 50, from a brain tumour, despite the loving care of his family and his long-term partner and later husband, Jamie Norton. I know only too well, as only someone who has seen it can know, what is entailed when this disease strikes.
I am grateful for the right hon. Gentleman’s intervention and I agree with his constituent. Brain tumours are perceived to be rare, although my argument is that they are not as rare as we think and the number of life years lost and the burden of the disease mean they have to be tackled. We know there is a correlation between the amount of money spent and survival rates in cancer. Survival rates for those with brain tumours went up by only 7.5% between 1970 and 2015. For cancer overall, they have doubled.
The hon. Lady is making some valuable points. Does she agree that a key issue is that a young researcher will look at the overall commitment and likely level of spending in this area during their career before deciding whether to specialise in it? The paucity of research spending in this area may mean that we do not get the amount and quality of research that is required.
I agree with the hon. Gentleman and I will come to that.
Between 2000 and 2012, we spent about £35 million on brain tumour research. The Government have rightly said that such spending has increased tenfold. It has, but it has increased from a very low base. That £35 million is from a total of about £4.5 billion of spending on cancer research.
The Brain Tumour Charity is based in Farnborough in my constituency. The hon. Lady mentioned the £35 million. Is that just public sector funding, or does it encompass private sector funding? The Brain Tumour Charity has already invested £14 million and plans to invest another £25 million by 2020.
That £35 million includes spending from the voluntary sector. The report states that it is simply not good enough for the Government to leave decisions on such spending solely to the voluntary sector.
We welcome the decision of Cancer Research UK and Children with Cancer UK to prioritise spending on brain tumour research as a cancer of unmet need, but we are calling on the Government to identify the gaps in funding, to take action to remedy them and most important, to make it clear that they see this research as a priority. We heard evidence that creating a positive research environment with an emphasis on increasing funding would not only keep our scientists in this country, but attract scientists from elsewhere in the world. Britain has the potential to be a world leader in this sort of research but at the moment we are not.
The Government said in their reply to the petition that decisions on funding are based on a number of factors, including the size and quality of the workforce. That ignores the fact that, as the hon. Member for North West Hampshire (Kit Malthouse) said, this is a Catch-22 situation. At the moment, young trained oncologists are having to change specialties or leave this country to pursue their research. Without an increase in funding, we simply cannot attract the good PhD students and postdoctoral researchers we need to make progress and to build up the cohort of young scientists who will go on to research this disease and may make the important discoveries of the future.
There are other barriers to research. One is the difficulty of getting enough tissue to work on. Only about 30% of patients are asked whether they will donate tissue, yet polls show that up to 90% would do so if asked. We do not have enough specialist support nurses and, according to the evidence, we do not even have enough people who can transfer tissue from hospitals to laboratories.
The other problem that researchers come across—the Government really could act in this area—is that they must make applications to many local biobanks to get enough material to work on. Often, those biobanks have different procedures, application forms and so on. We urge the Government, while keeping safeguards in place, to try to tackle the problem of biobanking. Unless researchers have access to tissue, they cannot do the fundamental research that we need. The University of Southampton has started to use tissue left over from diagnosis but, again, the system is grossly underfunded. In the end, I am afraid the issue comes back to money if we want to make progress.
We also highlight other issues, such as the need for access to non-therapeutic drugs, which can improve brain surgery outcomes, and the need for access to off-patent drugs, which can be used for new indications. The Government said in response to the Off-patent Drugs Bill that they did not need a Bill to allow that. We need to make progress in that area urgently, but I will not spend too much time on it now, because we are pressed for time.
I do, however, want to say this to the Government. I said earlier that brain tumours may not be as rare as is perceived, and the reasons for that are simple. The numbers are going up. The system of recording has been changed. The experts who spoke to us said that they do not yet know the reasons for that. Secondary tumours are not recorded, yet they still have to be treated, and benign tumours are not recorded, but they can still kill. It is that, and the huge burden of the disease, that we think the Minister ought to take into account, or at least ought to get his Department to take into account, to deal with this issue. The five-year survival rate for brain tumours is only 19.8%. When it comes to cancer as a whole, 50% survive for 10 years or more. That is the difference, because of lack of funding and lack of research.
I hope that the Minister will look at the personal stories in our report. They are there for a reason. Let me remind people of some of them: Saira Ahmed, dead at the age of 6, Abbie Walker, also dead at 6, Lucy Goulding, who died at 16, and Stephen Realf, whose sister started the petition. An RAF officer who was apparently in excellent health, he was diagnosed at 19 and dead at 26. There are many more, whom I do not have time to name. There are those who died and those who survived—remarkable people such as Hannah Jones, a young woman who gave evidence to us and now devotes her time to promoting the HeadSmart campaign. And there are the families of those who died. In all my time in Parliament, I have never met such an amazing group of people. They had undergone the most appalling tragedies, but did not want to point the finger of blame. They simply wanted to use their experience to make life better for others. They deserve that we listen to what they say.
I say gently to the Minister that it is not often in ministerial life that one gets a chance to make a real difference. We know that Ministers get bogged down in the minutiae of every day and that things come down the chain to them, but this is a chance to make a difference. It is a chance to leave a mark that will be there long after he leaves ministerial office—not that I am hoping he will leave soon—long after most of us have left Parliament, in fact.
Will the hon. Lady give way?
I am going to wind up my speech, if the hon. Gentleman will forgive me.
This is a real chance to save lives, so I say to the Minister: read the report and champion its recommendations in government. That way we can have world-class scientists in this country and save the lives of many people, including young people, who will have the chance to make an enormous contribution to this country. It is as simple as that. This cancer has been neglected for far too long. That now has to change. [Applause.]
Order. I know this is a sensitive subject, but I am afraid that people in the Public Gallery must not clap; I am sorry.
As I said earlier, a very large number of Members have written to Mr Speaker, and they often quote the fact that they want to speak on behalf of constituents, so my aim is to get everyone in and I will now have to impose a four-minute limit. I would be grateful if colleagues could resist the temptation to take too many interventions, because that will mean that someone at the end of the queue does not get in. I know that the first speaker will want to abide by that, because of her long experience.
It is a great pleasure to serve under your chairmanship, Sir Edward. I congratulate the hon. Member for Warrington North (Helen Jones) on such an excellent start to the debate. I also pay tribute to my hon. Friend the Member for Castle Point (Rebecca Harris) for her excellent chairmanship of the all-party parliamentary group on brain tumours, and to other hon Members who support her in that work.
My contribution will be succinct. As the hon. Lady pointed out, this is the largest cancer killer of children and adults under the age of 40, yet just 1% of research funding is given to find a cure or new treatments. The hon. Lady said that this felt to her almost like a Catch-22, and I think she is entirely right: a lack of research means that there can be difficulty in having effective professional development, which leads to continued late diagnosis. The fact that 61% of brain tumour patients are being diagnosed in A&E is backed up by information from my local hospital and Dr Lara Alloway, a consultant in palliative care there, who said that brain tumours are
“most frequently diagnosed when people present as an emergency with stroke-like symptoms, headache or confusion. It is less common for people to be diagnosed as an outpatient.”
The lack of early diagnosis was also picked up by my local primary care trust. However, the issue is not just a lack of early diagnosis, but a lack of guidance from NICE. There are just seven pages of guidance on this matter, but more than 30 pages for blood and haematological disorders. The limited evidence base makes it very difficult for doctors and GPs to be able to diagnose in the fashion that the hon. Lady talks about.
It would be difficult to do justice to the number of constituents who have contacted me about this debate. I pay tribute to them all. I pay particular tribute to Olya Elliott, who lost her son, to Sandra Welch, who was diagnosed after a year of seeking help from her GP—that was too late to be cured—and to the gentleman who talked about his daughter, who had died at the age of 44. The list goes on, and it is very difficult to talk about it. I think that the debate today will do a great deal to send a positive message to all those constituents. I pay particular tribute also to Jan Pearson, who came to my surgery on Friday and spoke incredibly movingly about her son Tom, aged 21. He was diagnosed with an inoperable tumour on his brain stem at the age of 18. He was diagnosed because of the tenacity of his mother, who identified the symptoms after five years of insisting to his GP and other medics that he needed help and support. It was really only through her tenacity that he got the brain scan that diagnosed his tumour, but unfortunately it was too late for it to be operable.
May I draw the right hon. Lady’s attention to my constituent, Caroline Fosbury, mother of Ella? Caroline lost her daughter at the age of 11. She said that it is a three-way cycle between support, awareness and research, and the family have started Ella’s fund to campaign for more research.
That positive effect in terms of fundraising is so important. When I speak to my constituents who have lost loved ones, that is often the way they can find most solace. The hon. Lady makes a very good point.
I also pay tribute to those who support my constituents who have gone through such appalling losses, particularly St Michael’s hospice, which cares not only for individuals who are going through the last hours of their lives, but for bereaved relatives and carers.
It is frustrating to have to restrict my remarks to four minutes because this is a subject about which there is so much to say, but I am delighted to do so because the restriction is an indication of the widespread interest that this debate has raised. If the Minister takes no other message from today, I hope that he will leave the Chamber understanding that this issue is now well and truly on the agenda and is not going to go away.
My interest in this matter was first piqued when the daughter of a friend was diagnosed as having a brain tumour. Her sister emailed me today:
“At age 34, my precious sister Louise was diagnosed with a meningioma brain tumour in January 2012. I felt like my heart had been ripped out my chest when I discovered this. Nothing can prepare you for the shock of dealing with such news.”
She went on to describe the treatment:
“We did not know until she woke from this surgery if she would be able to speak again because of the location of the tumour. A terrifying experience for us let alone for Louise as a wife and mother of three children.”
Of course, that was a benign tumour and, as a result of the surgery, Louise has made a full recovery, but it gives some flavour of the human cost.
Another way in which this subject came to my attention was through a constituent in Orkney. Caroline Kritchlow runs the Friends of the Neuro Ward at Aberdeen Royal infirmary, and her husband also has a brain tumour. She is a remarkable fundraiser, having raised £120,000 for the neuro ward, and I am sure she is as frustrated as I am to hear that, yet again, after three years of delays, the refurbishment of that ward—it is the last ward at Aberdeen Royal infirmary to be refurbished—has had to be put off until next year. Perhaps those responsible for that decision will see something of this debate and take the obvious lesson to be learned, which is that there really can be no further delays.
The Minister has heard the hon. Member for Warrington North (Helen Jones) give a full exposition of the recommendations of the Committee’s report, which he should have. The recommendations run to three pages, and he should have them printed out, laminated and kept on his desk—they should never be far from his elbow. It would be fairly easy to make early progress on a number of the recommendations, such as on raising awareness among general practitioners, which would lead to a greater likelihood of early diagnosis. It will take longer to see the real change that we want on other recommendations, such as the recruitment of PhD students, which is an area where we see opportunity for change and where spending would make a real difference.
The Minister no doubt has a long queue of people outside his office all asking for more money. This is one instance, however, where we can say that any money spent will be transformative. Expenditure on such research will mean the change that we all want to see.
It is a pleasure to serve under your chairmanship, Sir Edward. I congratulate the hon. Member for Warrington North (Helen Jones) on securing this debate. Today’s attendance is testament to how many of us have been approached by constituents, not just now but before the petition, asking us to come and speak on this subject. I will not take up too much of the House’s time.
Last November, I visited the children’s brain tumour research centre at the University of Nottingham, which gave evidence to the Committee’s report. The research centre is an outstanding medical research facility that provides vital support for children and their families as they undergo treatment, and for families who have lost a loved one to a brain tumour. The research centre also services Derbyshire—everyone with a brain problem has to go across to Nottingham—and it gives an outstanding service. The amazing work done in such centres is being held back, as has been said, by a lack of funding, which has been a problem for decades.
Brain tumours are the biggest cancer killer of children and people under 40, yet brain tumours receive just 1.5% of the £498 million spent on research into cancers. I am in no way saying that money should be taken away from research into other cancers; rather, I am pointing to the success that increased funding has achieved in other cancers, such as breast cancer and prostate cancer, for which patients now have an 80% five-year survival rate, compared with less than 20% for brain tumour patients. The lack of funding for brain tumours creates a Catch-22 situation, because researchers are not attracted into the field as the funding is not there for them to work with. As the report states, existing levels of funding have not been sufficient for researchers, such as those at the children’s brain tumour research centre, to make significant advances in their understanding of this horrific disease, although they are working very hard and feel that they are almost on the edge of a breakthrough.
As well as an increase in funding for research on brain tumours, we need greater investment in educating healthcare professionals on the symptoms of brain tumours. Too often people are misdiagnosed by GPs. That is not really the fault of the GPs, because they have to know everything about everything, which is not possible. They sometimes think that the symptoms with which they are presented could not be a brain tumour, and therefore they fail to send the patient for a scan, which is the only way to diagnose a brain tumour. That leads to a situation where 61% of brain tumour patients are now diagnosed at A&E, with children being a high proportion of them. Again, there is a Catch-22 because late diagnosis makes it harder to place patients in clinical trials to research much-needed cancer drugs. Also, the later they are diagnosed, the less chance there is of a cure.
Building on the success of the HeadSmart campaign in incorporating the symptoms of brain tumours, and the variants in children, young people and adults, into National Institute for Health and Care Excellence guidelines on cancer would help GPs to know when they are dealing with a brain tumour and would therefore increase scan referrals, which is the only way that a brain tumour can genuinely be identified. Early diagnosis would greatly increase survival rates and improve the quality of life of those who are diagnosed.
Will the Department tell us whether it believes that the current levels of funding are adequate for progress to be made on improving survival rates for this disease? We need extra funding. A constituent came to me who had been diagnosed with an incurable brain tumour. He wants more money to go into research, not to help him, but so that the people who come after him can have better care and better diagnosis so that they can be cured. We also need the extra funding—
It is a pleasure to serve under your chairmanship, Sir Edward. I have just a few words, and they are from my constituent, Mr Philip James of Tallarn Green, which is near the English border. Philip James is a 3D artist, and this is what he movingly wrote:
“I was diagnosed with brain cancer a few days after my 30th birthday where I proposed to my fiancée. Since then I have set a wedding date of 7th April 2017. It is my mission to help others dealing with this awful disease that has a preventable poor prognosis by doing a daily blog about how I’m fighting it and about what research I have done myself.”
Mr James is chronicling his condition in a daily blog. His is a very heartfelt story and it shows one of the many reasons why we need to listen to people who are fighting and battling against brain tumours and why it is so important that we as a country spend more on research.
It is a pleasure to serve under your chairmanship, Sir Edward. As a member of the Petitions Committee, it is a pleasure to be called to speak in this debate. I add my thanks to those who put together the petition, particularly Maria Lester and the Realf family—their love and passion for their son and brother came across in all our evidence sessions—and to all the others who came along and gave evidence. Hopefully this will be their report.
I declare that I am the chairman of the all-party parliamentary group on rare, genetic and undiagnosed conditions. Given the vast number of factors that cause brain tumours, I join colleagues in using this opportunity to call on the Government to do more to redistribute research funding more fairly among different cancer groups. There are limited resources available.
I commend the hon. Member for Warrington North (Helen Jones) on securing this important debate. The UK model of partnership between Government, industry, universities, the NHS and charities is the right leadership model. The Government have led the way with a taskforce on anti-microbial resistance; maybe the way forward here is a taskforce on how to deal with early diagnosis and extra funding, as well as bids from charities that would attract that funding.
I agree that the Government have been leading the way. No doubt we will hear from the Minister about some of the work that they have been doing to create such partnership models. I pay tribute to the work that my hon. Friend has been delivering in that area.
Limited resources are available to fund research. A vast number of conditions fight desperately for every resource available, and researchers in every field work hard to get one step closer to a cure. It is important that we take a moment to thank all our constituents who are working tirelessly to advance medicine, find cures and improve the life chances of all of us.
Given my hon. Friend’s expertise, has he considered the point made by the hon. Member for Warrington North (Helen Jones) about the loss of life years and whether it should be taken into account when we determine how to distribute our funds?
I agree, and as part of our report we have considered that and suggested that it be done. I hope the Government will consider a fairer funding formula in order to make a big impact on the number of life years lost. It is crucial that we strike the right balance when allocating research and development resources, both financial and otherwise, to ensure that all areas get a fair share of what is available. It is simply not right that issues such as brain tumour research continually miss out on funds.
I would like to take a moment to speak about a former councillor in my constituency of Bath, Richard Maybury, who sadly passed away around five years ago after finding that he had a brain tumour, which was unfortunately incurable. I have seen what his wife has gone through. He was in remission for a couple of years, and thereafter only palliative treatment was available. It is just one of many cases, but it brings up an important question. There are many varieties of brain tumour, some of which are curable but some of which can only be supported by palliative care. It is crucial that research is directed to all areas. Richard Maybury’s wife is calling for more to be done at an international level. We should be able to work with the likes of Germany and the United States, which are leading the way in this area.
There are clear imbalances that must be addressed in order to ensure that all crucial research areas receive sufficient funding. I know that the Government are committed to ensuring that we progress further with medicine and that more and more people survive all forms of cancers, yet the shocking figures that we have heard from the Chair of the Petitions Committee and the testimonials in its evidence sessions show that the funding model must be reconsidered to ensure that research into brain tumours is not neglected.
Brain tumour sufferers have benefited from the cancer drugs fund. They will benefit from the Government’s accelerated access to medicines review and from improvements to palliative care. More sufferers will benefit from genetic medicines as part of the genomics revolution, in which our country is currently leading the way. Data collection and participation in personalised medicine will improve with new emphasis from the Government. I agree with the petitioners, however, that brain tumour sufferers should not be forgotten, but should receive a fairer share of research funding. I hope that the Minister will consider this group of sufferers when making his closing remarks.
I congratulate the hon. Member for Warrington North (Helen Jones) on her detailed and concise presentation. I am here because my constituents have contacted me. I suspect that is why we are all here: we have poignant personal stories to share.
Brain tumours kill more children and young adults than any other form of cancer. Every day, 10 children and young people in the United Kingdom learn that they have cancer. More than 16,000 people are newly diagnosed with this form of cancer each year in the United Kingdom, yet just 1% of the national spending on cancer research is allocated to this horrendous disease. I am glad to see the Minister in his place; I always look forward to his responses. I am sure that he will respond in a positive fashion and give us the hope for which everyone in this Chamber wishes, along with our constituents.
The allocation of funding is even more alarming when we consider the survival rates for brain tumour patients. Breast and prostate cancer patients, to give two examples, have an 80% five-year survival rate, compared with that of brain tumour patients, which is less than 20%. Clearly, more needs to be done on investment in brain tumour research. Can the Minister indicate what partnerships he is encouraging between universities, Departments and big business to ensure that we can move forward?
Our colleague the hon. Member for North Down (Lady Hermon) could not be with us today, but she lost her sister, who was completely asymptomatic, at the age of 37. That reinforces the point that discovery often occurs too late, which is why research and awareness are crucial.
As always, I thank my hon. Friend for his intervention.
Secondary or metastatic brain tumours are particularly important to consider. Up to 40% of cancers in other parts of the body will eventually spread to the brain. Let us focus on the key issues, such as the blood-brain barrier.
The National Cancer Intelligence Network found that 61% of brain tumour patients were diagnosed in accident and emergency, including 53% of children up to 14 years old, 25% of those aged 15 to 24 and 20% of older adults. Although there are many charities, I will put in a quick plug for CLIC Sargent and its work. Its paper, “The Best Chance from the Start”, found that the rarity of cancer in children and younger people, added to the fact that symptoms can be non-specific, can make it challenging for GPs to recognise the symptoms.
Many constituents have written to me, but I will conclude by quoting two. One is my constituent Mary Patterson, a survivor. She was diagnosed, she had surgery and she is alive today, although her life is restricted. Another story involves a lady in my constituency called Heather, who writes about her late husband George:
“My own interest in this petition and upcoming debate came about because my husband, George Ramsey, died 1 July 2011 from a brain tumour, only nine weeks after diagnosis. He was just 50 years old, and had just retired from the fire service after 32 years of service. Unfortunately my husband received poor management from the neurosurgery department, and his treatment was delayed after the team ran out of time to discuss his case on two separate occasions.”
An ombudsman investigated and reported to the Assembly. I conclude with this comment of hers:
“In his last five years in the fire service, he was the community liaison and youth engagement officer for the Belfast area. The chairman of the Belfast City Council stated that George’s work had ‘made Belfast a safer place’.”
That is a touching and personal testimony. The sad thing is that it is happening to families up and down the country at this moment. Although we have the opportunity to get back on track, it is sad that it took a petition to bring us here.
I am pleased to have the opportunity to add my voice to this important debate. I thank the Petitions Committee for scheduling it, and its Chair, the hon. Member for Warrington North (Helen Jones), for her superb opening speech, which covered the issue fantastically. It is phenomenal to see so many hon. Members in Westminster Hall. That firmly assures us that the issue is now well and truly in the public eye and on the Government’s agenda.
I chair the all-party parliamentary group on brain tumours, and I am here because I attended the funeral of an 11-year-old boy, Danny Green. No parent should have to bury a child, and no child should have to attend a friend’s funeral, as I saw when Danny’s many school friends made a guard of honour for his coffin, something they will never forget. How on earth can one celebrate the life of someone who died aged only 11?
All hon. Members will have received a copy of Danny’s father’s book, “Danny’s Journey”, detailing Danny’s story from his first dizzy spell in November 2011 to his tragic untimely death just seven months later. It was distributed jointly by the Danny Green Fund and the Brain Tumour Charity. We should all find it shocking that, given that, as we have heard, brain tumours are the main cancer killer of children and young adults and that more life years are lost to them than to any other cancer, this receives as little as 1% of the national cancer research spend.
We have also heard that, over the past 30 years, although cancer survival rates have increased by 50%, brain tumour survival rates have increased by only 7.5%. The people involved are often children and the parents of young children, and those figures do not begin to illustrate the degree of lifelong disability that many of the survivors, of whom there are too few, also face, and the cost and burden added to their lives and those of their families.
Many small charities work tirelessly to make up the funding shortfall. To their immense credit, Danny Green’s parents, Lisa and Chris, and his sister Holly have raised more than £250,000 in the short time since his death, but surely we cannot rely on the hard work of sufferers and their loved ones. Like any parent here, I would give my life in an instant if it could save my nine-year-old’s, and I am certain that my mother, who has enjoyed a very full life for 82 years, would also do so if she could save anyone’s child. We must consider our priorities. Brain tumours may be considered rarer cancers, but their disproportionate effect on the lives of young children and young adults means that we must give them a much higher priority.
I start by thanking the Petitions Committee for introducing this important debate and commending my hon. Friend the Member for Warrington North (Helen Jones) for her excellent opening speech, in which she eloquently made the case on behalf of the 120,129 citizens who have signed the online petition. I also commend the hon. Member for Castle Point (Rebecca Harris), who is the chair of the all-party group on brain tumours, for her leadership on the issue and her very emotional speech, which I thank her for.
Over the years, I have had to deal with a number of individual cases, as I am sure other hon. Members have. Currently, I have three, and 132 of my constituents have signed the online petition. The response from our constituents on the issue is not surprising when we realise that, as we have just heard, malignant brain tumours are the biggest killer among all types of cancer of people under the age of 40 and of children.
Also, survival rates for brain tumours have not improved in the last 30 years; if anything, on some measures they have got worse. Currently, only 40% of patients will live for more than a year after diagnosis and less than 20% will survive for more than five years. However, as we have heard, despite those shocking figures, cancer research funding into brain tumours amounts to little more than 1% of the spend on cancer research. Due to the chronic and continuous underfunding of brain tumour research, there are clear knock-on effects to the services and treatments that patients access and receive. If we continue to limit the potential progress that properly funded research might make, those outcomes will never improve. That probably explains the 30-year plateau that I have just highlighted.
As with all cancers, early detection is key to boosting survival rates. That is why it is so dismaying to find that brain tumours are not included in the Government’s Be Clear on Cancer campaign. Early diagnosis not only helps to prevent avoidable death, but can relieve the stress on a patient’s life, as one recent case brought to my attention by a constituent exemplifies. After visiting their local GP twice about feeling generally unwell, my constituent was told that they had all the classic signs of stress and they were prescribed antidepressants.
My constituent, Rita Magorrian, got in touch with me about her granddaughter, Helen, who collapsed just before Christmas with a brain tumour. Helen had been to see her GP several times and had been told her problems were down to stress, but she had also been to see her optician and was told the same. As well as considering further training for GPs, does my hon. Friend agree that we need to widen the process to include opticians?
That is an excellent point, well made, and I thank my hon. Friend for it.
Two days later, when my constituent lost all strength on the left side of their body, they went straight to A&E, where it was eventually found they had three brain tumours. After receiving brilliant treatment by NHS staff and support from the Bobby Robson centre in Newcastle, thankfully my constituent is now in remission. However, that case clearly shows the need for improved awareness, as the situation would have been better if the GP had been able to spot the signs of a brain tumour sooner. We in the north-east have an excellent research facility in the Bobby Robson centre, but there are always concerns about its future, as it depends greatly on legacy and charitable donations.
It is also important that research considers the needs of patients. According to studies by Brainstrust, patients believe that more research and funding must focus on the quality-of-life issues, such as function and symptom relief, to help to improve life after diagnosis, whether the diagnosis is terminal or not.
That is reflected in the case of another of my constituents, Malcolm, who was given a terminal diagnosis of a glioblastoma multiforme, or GMB, 4 brain tumour. Despite being told by his doctor in the north-east that he was too sick for further treatment, Malcolm, along with his family, sought out specialists in London. He took the difficult and expensive decision to self-fund the life-extending drug, Avastin, which, although licensed for use in the treatment of some other cancers, was not available on the NHS for use in his case.
Malcom is due to receive another dose of Avastin, but he wants it to be administered locally and is unable to find an oncologist in the north-east who is able to do so, even privately, so Malcolm is faced with either travelling up and down to London for that treatment every two weeks, or perhaps up to Scotland, or to Leeds or Manchester. Although Malcolm has responded well to the Avastin treatment, more options need to be available to people in his position, with treatments to improve the quality of life and, where possible, to extend life. However, that is all for nothing when there is a clear postcode lottery on access to specialists and services, as seen by Malcolm and his family.
The chronic underfunding of research into brain tumours is clearly having an impact on the lives of those who are diagnosed with brain tumours, and that cannot and should not go on any longer.
It is a great privilege to serve under your chairmanship, Sir Edward, and I pay tribute to the hon. Member for Warrington North (Helen Jones) and to all hon. Members who have spoken with such passion.
We have heard how children are particularly the victims of brain tumours, so it is with great pride that I wear the daisy badge, in honour of Daisy Brooks, whose parents, Louis and Anna, have just about made it into Westminster Hall today to watch proceedings. I will briefly share Daisy’s story, because it shows what is at stake here.
On 3 May 2014, the Brooks family received the worst possible news, when their beautiful and much loved six-year-old daughter, Daisy, was diagnosed with a devastating and inoperable form of brain tumour called diffuse intrinsic pontine glioma, or DIPG. Daisy went from being a normal child at school one day, with absolutely no sign of illness, to being in hospital the next, and the following week she was having radiotherapy. Daisy’s parents were told that there was no hope of a cure, and that they would go through the usual process and its inevitable conclusion, but they showed the tenacity that other hon. Members have spoken of, and I pay tribute to their incredible efforts. They have raised £350,000 for further research, and having seen the pictures of their daughter throughout her treatment, quite frankly, they blew me away. Daisy’s parents are an example to us all.
The point is that Daisy’s parents persevered. They searched online and found Professor Steven Gill at Bristol children’s hospital, who is involved in the development of a software-guided robot that installs a series of catheters attached to a titanium device to deliver chemotherapy direct to the tumour. That is a risky form of surgery, but Daisy’s parents were prepared to try it because they had no alternative. Daisy underwent three rounds of treatment and, although the initial results looked promising, the tumour proved too aggressive, and Daisy passed away on 17 November 2014, hours after celebrating her seventh birthday.
Less than 10% of children with DIPG live longer than 18 months after diagnosis, and survival is even rarer, but there are two positives in this situation; first, Anna, Daisy’s mother, is expecting another child, as is very obvious; secondly, very positive steps have been made through that research. Research can deliver, if only we can back it. We have heard about the low priority that research into brain tumours receives. In this case, the research group—the Functional Neurosurgery Research Group—aims to identify new drugs for the treatment of brainstem tumours in children, using the new method that I have described.
I have many other constituents whom I would like to mention, but I know that other hon. Members want to raise their own constituency cases. My point is simple. My view is that I am a parent of four children, the oldest of whom is nine, but I cannot even begin to imagine what it is like to have a child, who is so vulnerable already, in the position that Daisy was in. Whenever a child is ill, we feel incredibly powerless, but we are not powerless and nor are the Government. We have the power to raise the priority of brain tumour research and I hope the Government do so, in memory of those who have suffered so tragically and so that we can deliver hope to those who, unfortunately, will suffer in the future.
It is a pleasure to serve under your chairmanship, Sir Edward.
As my hon. Friend the Member for Warrington North (Helen Jones) said, brain tumours are the biggest cause of cancer death among children and adults under 40 in the UK. Surely, research into that disease should be a priority in the UK and around the world.
I will talk today about five-year-old Cian Case. My friend, Huw Irranca-Davies, who has now left this place after being the hon. Member for Ogmore, has been dealing with Cian and his family for some time, and he wanted me to pass on Cian’s story.
At the end of November 2015, Cian was admitted to the Royal Glamorgan hospital with acute stomach pain. A scan identified a tumour on his spine and he was rushed to the University Hospital of Wales in Cardiff, so that as much of the tumour as possible could be removed. The trauma left Cian completely paralysed from the waist down, with the neurologists sceptical about how much mobility he could recover.
Cian was diagnosed with an extremely rare and aggressive cancer that affects the central nervous system and that is mainly diagnosed in very young children. The survival outcomes are not favourable. The “seeds” of this cancer had already begun to spread to Cian’s brain. Fortunately, Cian responded well to that initial dose of chemotherapy and is now receiving intensive chemotherapy to his brain and spine.
I pay warm tribute to Carole Hughes, the inspirational woman behind Peterborough-based Anna’s Hope. She is in the Gallery today. In view of the fact that cancer affects children in particular, does the hon. Gentleman agree that it is important that specialist neuro-rehabilitation therapy centres are set up to assist children in that position and to try to get them to fulfil their ultimate potential?
I agree with the hon. Gentleman, who makes an important point.
I am pleased to report that Cian continues to make good progress and that his mobility is improving weekly, defying the original prognosis. Cian’s dad, Richard, is one of the more than 120,000 signatories to the petition we are discussing. He understands that cancers such as Cian’s are rare, and that that is why funding may not have been forthcoming enough. He believes, however, that more research can lead to longer and healthier lives for youngsters blighted so early by this disease. I am pleased that Cancer Research UK has committed to increasing spend on research into brain tumours, and we can all welcome that good news.
It is difficult standing here today relaying the story of one family’s brush with tragedy and the long road to recovery ahead, so I do not want our successors, years from now, to face the same questions, wringing their hands and saying, “Something should be done.” The community has rallied around Cian and his family—the school, the rugby club and the community drop-in centre have all organised different activities to raise awareness and funds, for which the family are incredibly grateful. The Noah’s Ark children’s hospital, LATCH and everyone in the health service has been fantastic on every step of Cian’s fight. They are all doing their bit; now it’s our turn.
It is a pleasure to serve under your chairmanship, Sir Edward. I thank the hon. Member for Warrington North (Helen Jones) for her powerful start to the debate.
I want to spend a bit of time talking about the brilliant work being done in my constituency at the University of Portsmouth. The university hosts one of the largest centres of excellence for brain tumour research in the world, led by Professor Geoff Pilkington. The department collaborates with research centres around the world and Professor Pilkington is much in demand at international conferences. The centre is a flagship research body in the UK, but it is coming to the end of its core five-year funding, which will be reviewed by international scientists at the beginning of May. Although I am sure that it will come out with a top review, the next five years of funding might depend on that. It will mean £1 million a year and the ability to apply for more grants and employ more postgraduates. It is absolutely crucial to bring in new people to increase the depth of research and it is worrying that too many top research centres are continually fighting for more funds.
The research being conducted at Portsmouth is also heavily funded by the third sector. The core funding comes from the charity Brain Tumour Research, which has provided about £500,000 per year for the past four years. That money has not only funded 10 researchers, but has acted as a catalyst for donations from other charitable and third-party organisations. The centre now has between 17 and 20 researchers at any one time.
As a centre of excellence, the University of Portsmouth attracts some of the brightest students from all over Europe and beyond. Recently, the research unit has had new staff from Portugal, Italy and other places around Europe, who are contributing significantly to our understanding of this terrible disease, but extra funding is needed to enable brain tumour researchers to stay in their field. Although charities are desperately trying to bridge the gap in funding to retain the researchers, it is not enough to prevent them from moving into other fields.
I speak on behalf of the many constituents in Fareham who have been affected by this devastating and indiscriminate disease, for example, Simon Tier, whose best friend sadly died because of a brain tumour and who is an indefatigable campaigner. Does my hon. Friend agree that current rates of funding are insufficient and that we need between £30 million and £35 million per year, in line with funding for research for other cancers?
Yes, my hon. Friend is absolutely right, and I hope that those in the third sector will continue to be helped to raise funds because it has obvious implications for the progress of brain tumour research. Those currently involved are working incredibly hard.
I had the fortune of meeting Kathleen Keatley, a final year PhD student who is sponsored by a charity called Headcase Cancer Trust, and her colleagues at their labs last month. The passion, knowledge and dedication to research that the students have should be celebrated. The work the unit is doing is truly ground-breaking. Kathleen is doing research into mitochondrial mutations in glioblastoma, which is one of the most common and aggressive brain tumours. Greater understanding of glioblastoma will improve the effectiveness of treatment. We have spoken in other debates about the role that innovative treatments have in future NHS provision and research might result in personalised treatment for those with brain tumours. At Portsmouth, innovative treatments for the most serious conditions are already being worked on but we need to invest more to encourage that development.
During my visit to the University of Portsmouth, the message was clear that more funding means that we can accelerate our learning. By increasing our funding, we can continue to attract and retain the brightest people from within, and outside, the UK.
I am sure that the Minister is pleased to hear about the excellence that is in evidence in Portsmouth and that call for additional funding, because funding is key to research and research is key to early diagnosis.
When my husband and I received the shock diagnosis for our son, we had just days to respond, even though he had been, at that point, under the care of the local hospital. Our situation ended in a happy conclusion, but serving as I do with my hon. Friend the Member for Castle Point (Rebecca Harris) on the all-party group on brain tumours, I know that too many stories end in grief.
Life expectancy, diagnosis and treatment continue to improve for cancer as a whole, but the current lack of knowledge about brain tumours means that 60% of diagnoses happen in A&E. For many of those people, the story is one that no cancer victim should ever hear, which is that the diagnosis came too late. I am really pleased that the son of my hon. Friend the Member for Eastbourne (Caroline Ansell) is doing well.
The socio-economic effect is that 21 years are lost for people with brain tumours compared with 13 for breast cancer. We need to fast track treatments from the laboratories to patients. They are available, but regulations can make progress slow and we need to find more rapid ways of improving access to drugs. It is vital that we support more funding for brain tumour research and also a quicker system of getting treatment to patients.
It is a pleasure to serve under your chairmanship, Sir Edward. I congratulate the hon. Member for Warrington North (Helen Jones) on superbly outlining all the reasons why we need to take action on the issue. We should also congratulate, as a House, Maria Lester, on bringing forward the petition, along with all the others who have fought to have the issue addressed.
The stories we have heard are heart-breaking. They are emotional stories about people throughout the United Kingdom. All of us have constituents who have been affected. Those stories are demanding of a response from us as parliamentarians and from the Government—a response saying that we are listening and that we will do the right thing and ensure that we do all we can to support increased funding for research into this killer.
A constituent of mine, Katy Sutherland from Dingwall, has asked me to tell her story, which is yet another demonstration of why we must act. Katy said to me:
“My own interest in this petition and upcoming debate came about because my mum Jackie…was diagnosed with a high-grade brain tumour two and a half years ago—she had just celebrated her 49th birthday. The diagnosis came as a huge shock. Since her diagnosis she has been through two major surgical procedures and has had countless rounds of chemotherapy and radiotherapy. When you are diagnosed with brain cancer it is always a brick wall terminal diagnosis; there is no known cure.”
She went on to say:
“I was nothing short of shocked by the lack of funding into the research of brain cancer; just 1% of Government funding is allocated to this notorious killer. I have raised vital funds myself towards research by doing various runs over Scotland, but not enough to make a difference. I would never wish this horrendous, debilitating disease to strike anyone. The impact and change it has had on my family and our previously ‘normal’ lives has been huge. Watching someone you love being so brave, when you both know there is no real light at the end of the tunnel, is extremely difficult…With many cancers now curable with early diagnosis, research has come a long way with the help of Government funding. However, there is still very little known about the biggest cancer killer in the under-40s and I hope you will agree with me that this needs to change!”
Shortly after my election to this place in 2010, I was diagnosed with a brain tumour, an experience I share with the hon. Member for Hexham (Guy Opperman). We were both able to return to the House fully fit thanks to the excellent work of surgical teams in the NHS in Sheffield and in London. Does the hon. Member for Ross, Skye and Lochaber (Ian Blackford) recognise that, alongside research, support for victims of brain tumours is also important? Does he recognise and celebrate the excellent work done by charities such as Headway, which supports those suffering from the consequences of brain tumours and other brain injuries?
I am most grateful for the hon. Gentleman’s intervention. He demonstrates, as does the hon. Member for Eastbourne (Caroline Ansell), that we are so lucky that people such as them have been able to come through this. It demonstrates why we need investment in diagnosis, research and support for those affected and their families—so much needs to be done, because there is so much that we are losing as a society. So many young people’s lives are being taken away. If we do the right thing by putting that investment in, we can deal with the issues and ensure that many of our people can survive this dreadful disease.
Like many Members here, a number of my constituents have contacted me who are suffering from brain tumours or have family members suffering from brain tumours. My mother is suffering from a brain tumour. No matter what I hear from them about excellent treatment and fantastic charitable work, I agree that there is no substitute for investing in research so that in future other people do not have to suffer such experiences, as so many are.
I hope that we have crossed that Rubicon today and that the Government will recognise the responsibility that they have. This is the last big cancer where we have not had the appropriate funding into research. Let us ensure that we take our responsibilities seriously, not only for all those here today, but for all those we can protect from this dreadful disease in years to come.
Katy’s words, which I read out earlier, are a call for action. We cannot and must not let down her or the many others who have asked us as parliamentarians to address this terrible killer. The case for increased funding is irrefutable. We know that brain tumours kill more children and adults under 40 than any other cancer. Like most cancers, the incidence of brain cancer is rising. Fewer than 20% of those diagnosed with brain cancer survive beyond five years, but despite those shocking statistics brain tumour research accounted for just 1.5% of the £498 million spent on cancer research in 2014. Less than £8 million is spent on brain tumour research.
As Maria Lester has said:
“History has shown that where funding leads, breakthroughs follow. Just look at the improved survival rates for breast cancer and leukaemia since the 1970s. I would like to add here that I do not wish to see money redirected from other cancers but overall investment increased so that brain cancer achieves parity of funding.”
Brain Tumour Research has echoed that by calling for funding to increase to between £30 million and £35 million. It has also quantified that there is an average of 6.9 deaths of men and women under 45 for every £1 million in research spending on all cancers. For brain cancer there is an average of 82.5 deaths of men and women under 45 for every £1 million spent on research. Those statistics should shock and shame us and all, and they demonstrate why we must take action.
In conclusion, it is important that the Government respond positively to the petitioners, the Petitions Committee report and those asking legitimate questions this afternoon. I hope the Minister does that. I ask him to not let us down. Most importantly, will he give some hope to those who will suffer from this cancer by showing that we are determined to improve the survival rate by taking action and making it a priority?
May I begin by welcoming this long overdue debate? The importance and impact of the issue are impossible to overstate and have been eloquently set out by other right hon. and hon. Members. Of all cancers, brain tumours are the biggest killer of people under the age of 40, with fewer than 20% of those diagnosed surviving beyond five years. Although welcome progress has been made in the treatment of and research into other cancers, with significant improvements in survival rates, sadly, that is not matched in respect of brain tumours. A number of problems remain.
My right hon. Friend the Member for Loughborough (Nicky Morgan) is sadly unable to speak in today’s debate, but her interest in and commitment to this cause are well known. She asked me to mention her constituents Terry and Eileen Smith, who lost their son Michael last November, and David Bird—his wife and daughter came to see my right hon. Friend—who sadly passed away after a very late diagnosis; that came too late for anything to be done.
Those stories are echoed by that of Jake McCarthy, whose family live in Rothley in my constituency. He was a bright, talented 24-year-old who on Christmas eve 2012 lost his life to a brain tumour diagnosed too late. Jake’s family and friends set up the Jake McCarthy Foundation to help to prevent others from experiencing such a tragic loss. The foundation helps to raise awareness of the symptoms and promotes the importance of early diagnosis. So far, it has raised more than a quarter of a million pounds. On 11 June we will see the third annual cycle ride to raise yet more money. Members of Jake’s family who set up the foundation are here today, and I pay tribute to their bravery and the work they have done through the foundation.
My hon. Friend is speaking powerfully about his young constituent. Does he agree that brain cancers, precisely because they affect children and young adults in the prime of life, disproportionately affect others? I pay tribute to my constituent Adam Bolton, a father of four. An owner of a small business employing 15 people, because of his treatment, he has had to sell his business.
My hon. Friend rightly draws attention to the human consequences of this terrible cancer. It is clear that, while brain cancer is rarer than some, the mortality rate is very high, and awareness of symptoms and swift diagnosis are vital. It is research, however, that holds the key to beating the disease in the long term. Other Members have cited the stark statistic that research into the disease accounts for just over 1% of the £498 million spent on cancer research, and that is truly shocking.
Many of my constituents have also raised this important matter with me. Brain Tumour Research in Buckinghamshire has requested not just an increase in funding from Government, but an absolute minimum, on which we can argue for increased funding over the years. Does my hon. Friend agree that that is the right approach?
My hon. Friend is absolutely right. We need to see the amount of funding increased to the £30 million to £35 million proposed in the petition. I was disappointed by the Department’s official response, which essentially appeared to abrogate responsibility for helping to identify and address areas with insufficient funding. I echo my hon. Friend the Member for Mid Derbyshire (Pauline Latham) in asking whether the Minister thinks that the current level of funding is adequate. If it is not, what steps will the Government take not to pass the problem to the voluntary sector, but to take the lead in addressing and filling that gap?
The Petitions Committee was right to state that brain tumour patients have been let down by a lack of leadership from successive Governments. This is not a party political issue; it is about getting it right. I hope that the Minister’s response, as his responses normally are, will be positive, constructive and encouraging. It is through the efforts of Jake McCarthy’s family and friends and people like them across the UK that we are having this debate. We owe it to them and to Jake to rise to that challenge.
We have 15 more speakers. If they all stick to about four minutes, we should get everyone in. Members of the public have written to their MP and their MP is here. They want to hear their MP speak, so I know that everyone will try to keep to their four minutes from now on and not take too many interventions.
It is a pleasure to serve under your chairmanship, Sir Edward. I pay tribute to my hon. Friend the Member for Warrington North (Helen Jones) for her exceptional speech and to the chair of the all-party group on brain tumours, the hon. Member for Castle Point (Rebecca Harris), for making such a moving speech.
As we have heard, brain tumours account for 40% of all cancers in children. They are the leading cause of male deaths for 20 to 29-year-olds and they are the biggest cancer killer for those under 40. We do not have a good survival rate for brain tumours; four out of five people will die within five years of being diagnosed. Brain tumours are on the increase. Twenty-nine people a day are diagnosed, reducing life expectancy by 20 years on average, which is the highest for any cancer.
Brain tumours are the largest cause of preventable or treatable blindness in children, and childhood brain tumour survivors are 10 times more likely to suffer long-term disability than well children. This accounts for 20,000 additional disabled life years for all children who are diagnosed each year. We have heard about the low base of research funding for brain tumours. The Minister has already been asked about that and I look forward to a favourable response.
Behind all the facts and figures are the personal stories. I was particularly moved by one of my constituents who wants to remain anonymous. He has a young family and he has had a difficult time. He told me he has gone from being a fit, healthy individual to one who struggles to do many of the everyday things that a dad wants to be able to do with his children. He was diagnosed last year at the age of 40 with a grade 2 oligodendroglioma. After an 11-hour craniotomy, during which he was awake, he has spent much of the past nine months fighting infection and undergoing extensive physiotherapy to help him to learn to walk again and to enable him to live a relatively normal life. He started radiotherapy at the Christie last month to try to control the regrowth of the tumour. Unfortunately, the nature of these things means that it is almost certainly regrowing, yet he says he is one of the lucky ones with, hopefully,
“a decent number of years ahead”
of him. However, he is taking nothing for granted. He has been lucky in terms of being awarded an Access to Work grant, which has been invaluable in helping him to stay in work.
I also want to mention a young man, Christopher Clarke, who was 18 when he died of his brain tumour. He was a lovely lad. He was so cheerful in spite of the diagnosis and prognosis. He had a profound effect on his circle of friends. Even 10 years after his death, they are still fundraising for the trust that was set up in his name.
Satvinder Uppal was 54 when she died of a brain tumour five years ago last week. The real issue for Satvinder’s family was the delay in diagnosis of the brain tumour, which we have heard is common. In spite of prolonged jaw pain, severe headaches and memory issues, the tumour was not picked up when she went on various occasions to visit her GP. It was not until she collapsed at home that she was finally diagnosed at A&E. As her family said,
“The specialist cancer centre was brilliant, but getting the diagnosis in the first place was the issue.”
What does the Government plan to do to extend brain tumour research from the current low level? What will the Minister do to ensure that clinical guidelines reflect the poor diagnosis rates?
The outcome of today’s debate is an incredibly simple one for my hon. Friend the Minister and the Department. It is to step up to the plate that the hon. Member for Warrington North (Helen Jones) and others have already referenced. There is an unjustifiable disparity in attention and funds, which are not being provided for research into this type of cancer, whereas others attract it. I see a role for my hon. Friend’s Department. A number of right hon. and hon. colleagues have referenced the huge and valuable local fundraising that often goes on as a result of an individual tragedy. To avoid duplication and some of the problems that the hon. Lady referenced—the access to tissue and so on—could the Minister say in his summing up what role, if any, the Department might have in leading some form of co-ordination to try to get a national approach? However, that should not be seen as an abrogation, relying on the voluntary sector for the Department not to step up to the plate.
At the first or second surgery that I held after the election last year, a constituent called Sacha Langton-Gilks came to my surgery, and her story is replicated so many times. She had lost her son at the age of 16 to a brain tumour; he was diagnosed at the age of 11 in 2007. For five years he was treated very well with chemotherapy and radiotherapy, but underwent 11 brain operations. The cancer reappeared in May 2012 and such was the physical toll on him and the family, they decided to go for the quiet option and not to prolong his life through any unnecessary and probably futile suffering. We must do something about all those tragic stories.
If I may, I want to talk briefly about the work and the campaign of HeadSmart. I cannot understand, and neither can my constituent who works on its education side, the Department’s reticence to have HeadSmart’s booklet inserted into the little red health book of every child. We must improve education and knowledge about this. Every death that we hear about is met by frustration and a sense of futility, which could so easily be evaporated if we were able to have a better and more pronounced understanding of the subject.
We have to do more about screening. It is unjustifiable that a child in the UK with a brain tumour takes on average three times longer to be diagnosed than somebody in the United States of America and even somebody in Poland. We are the world’s fifth largest economy. We know that there is pressure on the public purse, but, given the vulnerability of so many of these young people, now is the time for action. Will the Minister work with HeadSmart and others to get the information booklet into the little red health book and also to promote the information talks that HeadSmart provides within schools? It is crucial in personal, social, health and economic education, which is not technically required in academies. That is something we will have to think about as another aspect of policy, but now is the time for the Government to step up to the plate.
It is a pleasure to speak in this debate under your chairmanship, Sir Edward. I apologise to other Members: I was not here for the start of the debate because I was upstairs in a Delegated Legislation Committee dealing with the code of practice under the Modern Slavery Act 2015, so unfortunately I did not hear what by all accounts was a powerful speech by the hon. Member for Warrington North (Helen Jones). I want to thank her not only for her role in securing today’s debate, but for the quality of the Petitions Committee report, “Funding for research into brain tumours”.
I was delighted to be here for the contribution by the hon. Member for Castle Point (Rebecca Harris), whose work as chair of the all-party group on brain tumours I admire and, as a member of the group, try to support. I thank Maria Lester for the petition, which is welcome and gives us the chance to follow up on the work done by so many other people to point out exactly how little funding goes into research into brain tumours compared with other cancers. The statistics have been quoted again and again today. I can do my little bit as well, but no matter how many times the statistics are quoted they do not become cliché-worn. It is still a shock when we consider the impact that brain tumours have.
[Ms Karen Buck in the Chair]
Brain tumours represent 1% of cancer diagnoses and 3% of cancer deaths. They also represent 2% of all deaths under 60, so that shows us what we are dealing with. It is shocking that the Government persist in committing relatively little to specifically support research into brain tumours. That is why I want to thank Brain Tumour Research for its work in Parliament and so many other places to raise awareness and funds, and then to have those funds applied to excellent work that hopefully can transform prospects for many people.
Like others, I have been contacted by constituents about this debate, including by Anne-Marie, who wrote to me about her husband, who is 45 and was diagnosed with a glioblastoma last August. She has pointed out the major effort going on in the United States via the “moonshot” campaign, which received a lot of attention after the tragic death of Joe Biden’s son. She referred me to some of the letters that were written to Joe Biden in the context of the “moonshot” campaign. She said she identified strongly with some of those letters, which spelled out the frustrations and feelings that she and her husband experienced. Our efforts should not just be about ensuring that more funding goes into research per se. We must ensure that it incentivises new treatments and fosters and facilitates innovation. Doing one will help us do the others; it will make such a huge difference.
One of the reasons why my constituents are so aware of brain tumours at the moment is that the top-class footballer Mark Farren, a young man of 33, died in February. He was a record-setting and record-breaking goal scorer who played for Derry City and Glenavon. He tragically lost his battle, even though the football family—not just those in Ireland, but people here such as Wayne Rooney, Roy Keane and others—raised money to help to get innovative treatment for him. He lost his battle, but the fight goes on.
It is a pleasure to serve under your chairmanship, Ms Buck. I am a member of the Petitions Committee, which hosted this debate, and I pay tribute to our Chairman, the hon. Member for Warrington North (Helen Jones), for her opening speech, in which she laid out clearly and comprehensively the argument that we need to make today. The subject of this debate is close to many people’s hearts. We have heard many tragic stories of people who have suffered from this terrible disease, but also the stories of hope of people who received treatment and survived. It is absolutely right that we are holding this vital debate.
As many hon. Members said, brain tumours are the biggest cancer killer of children and adults under 40. It is the most costly form of cancer in terms of years lost. It is therefore legitimate for us to ask why research into brain tumours has been so underfunded for so long. Patients and families up and down the country understandably feel let down by the lack of action of successive Governments. During the Committee’s research into this issue, I was particularly saddened to learn that the survival rates for brain tumours have improved little in the past 30 years. Surely we as a nation should not and cannot accept that. It is time to take action for change.
It was highlighted to us that the funding of brain tumour research is inadequate and has not been sufficiently prioritised. As many hon. Members have said, of the total amount of money spent on cancer research, about 1.5% is spent on research into brain tumours. I join those who call for the number of years lost to be a major factor in allocating funds for research.
Like many hon. Members, I have been contacted by constituents who told me their stories. I want to highlight the story of a family who do not want to be named. They battled to get to the bottom of why my constituent was feeling so poorly. His GPs maintained that he was suffering from depression. In desperation, they eventually paid for a private MRI scan, which revealed a brain tumour. Having already faced major battles to get the diagnosis, the family quickly learned that there was a lack of money for support and treatment for that devastating illness. Tragically, they do not doubt that if they had not had the money to pay for the scan privately, my constituent would not be here today. That is not acceptable. I wholeheartedly support their calls for better awareness among GPs and fairer funding for brain tumour research.
The Petitions Committee report sets out some clear recommendations to the Government, and I urge the Minister to consider them carefully. We can provide better leadership to raise awareness of brain tumours among GPs and other health professionals. We can strive for earlier diagnosis. I ask the Government a question that many hon. Members have asked: is the current level of funding adequate? If not, what can the Government do about it? It is too late to save those who have already tragically lost their lives to this disease, but it is not too late for us to take action to save lives in the future.
It is a pleasure to serve under your chairpersonship, Ms Buck. I congratulate the hon. Member for Warrington North (Helen Jones) on her dedication to this issue. I am grateful for the opportunity to speak in this important debate. I am also grateful to Stephen Realf’s family, the supporters of the petition and the Petitions Committee for helping to bring this debate to the Chamber.
Although brain tumours are often considered to be one of the rarer forms of cancer, as we have heard, they clearly have a significant and devastating impact. Brain tumours are the biggest cancer killer of the under-40s and children, and they result in more life years lost than any other form of cancer.
The Petitions Committee concluded that brain tumour research is not adequately funded and prioritised in the UK, and that the Government fail to grasp their funding responsibility and the seriousness of the concern. Sufferers have to fight for diagnosis, treatment, support, awareness, and funding. There is little choice in the treatments available, and treatment protocols may be non-existent.
Earlier this year, the Scottish Government announced a new cancer strategy comprising a number of different actions to help to treat cancer, diagnose people more quickly and deliver better care. It includes £10 million of additional support to enable quicker access to diagnostics for people with suspected cancer and a Detect Cancer Early programme.
There is an acknowledged need to include brain tumours in public awareness campaigns and to develop appropriate care pathways. In 2011, the UK’s first brain tumour tissue bank was opened in what is now the Queen Elizabeth university hospital—a service that facilitates co-operation on research for treatments. Glasgow also has the new Beatson West of Scotland Cancer Care Centre, which is one of the most advanced NHS cancer centres in the UK. Importantly, the University of Glasgow has a brain tumour research fund, which supports local research projects—in particular, smaller projects that do not get funding from larger organisations. It also helps to enable a multi-disciplinary approach to research, which includes input from medical staff involved in front-line patient care and the scientific community. Brain tumour research and treatment must be funded appropriately across the UK.
I was contacted by my constituent, Mrs Robinson, whose husband has a brain tumour. She made it clear to me that they want the system to improve for everybody. I would like to comment briefly on the emotional impact of diagnosis. We need better psychological assistance for those affected and their families, and we need to support their mental wellbeing, alongside their physical health.
On early diagnosis research treatment and care pathways, I would like to remind hon. Members of the need for improved palliative care. I recently lost a much-loved uncle, David McGilvray, to cancer. We now have a good local facility—Kilbryde Hospice—to assist families in that situation, but it was unfortunately not opened in time for my uncle to benefit from it. We need such facilities across the UK, so that families can access palliative care at their times of greatest need and people with cancer can die—if they must—with dignity.
It is a pleasure to follow the hon. Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) and the many others who have spoken eloquently in this debate. I have just a few small points to add to what has already been said. I have personal experience of brain tumours—the first time I became aware of death was when the younger brother of a close friend at primary school passed away. People often learn to talk about such things with a fellow child.
I want to speak on behalf of two constituents today. The first, Daniel, is in his 20s and is a very capable young man in the community. He set up a local youth club, and he is now involved in making a film about his experience of living with a brain tumour. He has explained to me that the biggest issue for him is the lack of available drug options. He would like to see more research into non-chemotherapy drugs.
Another family in my constituency who made contact with me in advance of the debate is Colin and Joyce. Their daughter Jennifer died 10 years ago due to an undiagnosed brain tumour. Today, I am sad to report, would have been Jennifer’s 32nd birthday. They have asked me to raise in particular the need for equity of access to speedy diagnostic tests, on a par with common cancers. They believe, rightly, that guidelines backed by robust research are needed to educate medical and healthcare professionals, as well as the general public, on the range of symptoms that can indicate brain tumours. The Bell family, also rightly, ask for better research into new treatments, access to clinical trials for new treatments and—this is crucial—rehabilitation therapies to improve quality of life.
The Bells are impressive in so many ways, because they lead the Norfolk Brain Tumour Support Group. I want to emphasise to people in Norfolk that that support is available to them. At the support group, I met some nurses from the Norfolk and Norwich university hospital, as well as patients. The nurses told me about not only the difficulties of diagnosis, but the complexities of treatment. The treatment pathway can be complex from the perspective of the patients and of the nurses and doctors, and there are also challenges post-discharge. In the words of the Bell family, to achieve a better future,
“charities, the NHS, educational and research institutes must work together and communicate effectively. This is crucial to make the best of available resources in the current economic climate.”
Joyce and Colin Bell
“very much hope that the debate will result in increased funding being made available to improve outcomes for people affected by brain tumour”.
I strongly agree with my constituents. We must make the best use of support groups, such as our local one, and of symptom advice, such as that of HeadSmart. Ultimately, however, we must look to see whether we can do anything better in diagnosis, on the pathway once people are under care, and for their needs post-discharge.
I pay tribute to my hon. Friend the Member for Warrington North (Helen Jones) for her succinct and elegant explanation of the issues and problems.
I am here to talk about my constituent James Hinnigan and his achievements since diagnosis, not least of which was to ensure that Makerfield people top the list of signatories to the petition. James was travelling with his family, but settled in Australia. Then he got a tingling sensation and his speech started coming and going. Fortunately, he went straight to A&E. He was asked to draw a diagram of a clock and, to his amazement, he could see only one side of it—he could not manage to get the other side of the clock going. The A&E staff thought he had had a stroke, but an MRI scan revealed a brain tumour, low level but operable.
James felt isolated, so he came home to Makerfield and moved back in with his parents. In Australia, however, he had read about a pioneering treatment, and he was referred to Charing Cross hospital, where they use the knife and laser. He recently had the operation, in which he was woken up during the procedure and the surgeons assessed, by talking to him, how much tissue they could remove without damaging his brain function. He has told me that he is now recovering well and looking forward to the birth of his second child at the beginning of May. I know that we would all wish him well.
That is a remarkable story, but what is even more remarkable was James’s reaction to the news. He said, “This is the hand I’ve been dealt and I just have to get on and play the game”—and he is certainly playing to win, not just for himself, but for all those diagnosed with that terrible condition. He approached me to discuss the problems and put me in touch with Brain Tumour Research. I learned a lot, and I truly believe that more needs to be done in diagnosis and in treatment. I said to him that I will do what I can to raise awareness.
That was not enough for James. He held a sponsored 8-till-8 spinathon, aiming to raise £2,740, which is the cost of one day’s research into brain tumours. He actually raised double that amount, which was a tremendous effort—even though he had to sit on a cushion for the rest of the weekend. He also attended the event at Speaker’s House, wearing a hat to promote awareness of brain tumours, only four days before his operation. He is now planning to paddleboard the Leeds-Liverpool canal to raise even more money.
That young man, who is only 36, is a fantastic role model. We owe him and all the others like him a future, which we can give them by increasing funding for brain tumour research and by prioritising a reduction in the number of early, needless deaths. Early diagnosis and pioneering new treatments must be a priority if we are not to lose James and other such people.
The Westminster Hall Chamber is as full today as most of us have ever seen it. We are all here as a direct result of the commitment of the family of my constituent, Stephen Realf. As the hon. Member for Warrington North (Helen Jones) told us in her persuasive opening remarks, Stephen lost his life in August 2014 as a result of a brain tumour, aged just 26. His sister, Maria Lester, was instrumental in setting up the petition calling for more research.
I will speak about Stephen and about Maria’s campaign in his memory, but I became aware of the effect of a brain tumour on a young person many years ago. A couple I knew well lost their daughter when she was only 10 years old, which had a huge impact on her parents, so when Stephen’s father, Peter, came to see me at my surgery in July 2010, I had some understanding of the effect caused on Stephen’s life by a brain tumour.
Stephen’s dad had actually come to speak to me about how Stephen’s employer, the RAF, had been dealing with Stephen’s illness. From an early age, Stephen had had an ambition to fly with the RAF, so he and his family were delighted when he was accepted as a trainee officer and started his flight training. His diagnosis came when he was 40 hours into flight training. He and his family realised that his dream of becoming a pilot would not come to fruition.
There was some talk about Stephen’s role after his diagnosis, and the concern was that the RAF was not dealing with his case as quickly as it might have done. Stephen was eventually given a medical discharge, but the RAF arranged for an air marshal with responsibility for personnel and capability to deal with the delays, then telling Stephen about the changes in process that had improved their systems. It is important that the RAF acknowledged the situation, and that Stephen was not left feeling that he was not being supported by the RAF once he was discharged. That demonstrates the need for understanding by employers, as well as by the medical profession.
After Stephen died, the family put their energy into raising awareness and raising money for Myton hospice in Rugby. In August last year, Stephen’s sister, Maria, wrote an article in The Mail on Sunday magazine, You. Around that time, too, the idea of launching a petition calling for a debate in Parliament was developed. I congratulate Maria on how she set about doing that. I am delighted that the required number of signatories was easily reached, leading to us being here today.
Members across the House are now much more aware of the number of people diagnosed with this disease and of how brain cancers kill more children and adults under 40 than any other cancer. We now know that only 1% of research spending on cancer is allocated to brain cancers and how the five-year survival rate is less than 20% when there are instances of progress with many other cancers over the past 30 years.
I am proud that my constituents have played such a key role in raising awareness and pleased that they have turned what was for them such a sad time into something positive, to ensure that their son leaves a legacy of a greater likelihood of earlier diagnosis for those affected and, perhaps, of a longer and better quality of life. I very much hope, importantly, that there will be more funding for research on that devastating disease. Along with other Members, I look forward to hearing what the Minister has to say.
It is a pleasure to serve under your chairmanship, Ms Buck. I pay tribute to my hon. Friend the Member for Warrington North (Helen Jones) for securing the debate and for producing, along with the other members of her Committee, an excellent report arising from the e-petition on funding for research into brain tumours. I also commend those who created the e-petition and those who signed it. Their laudable campaign has afforded us a substantive opportunity to discuss the unmet need for and chronic underfunding of research into brain tumours, the biggest cancer killer of children and adults under 40.
In the days and weeks leading up to the debate, I received a number of emails and letters from constituents outlining the shocking human cost of what is a devastating disease. Each of those missives included a personal account of the distressing experiences of the correspondent whose life had been affected by this terrible disease. We have heard many such stories today. It was striking how many of them had common themes and how the experiences of one individual and their family were echoed in the experiences of another. The Petitions Committee’s report remarked on the similarities among the stories they heard and set out those common themes, which included
“difficulties and delays in getting a diagnosis; lack of treatment options; poor survival rates and the huge burden of the disease on patients and their families.”
There was unanimity from patients and their families that those problems were exacerbated and perpetuated by chronic underfunding of research into the cancer, and that those problems could be fundamentally addressed only through a significant increase in resources. They argued that there is a clear correlation between the funding for research on a specific cancer and improved survival rates and reduced incidence. Yet despite brain tumours being the most fatal of all cancers in the number of life years lost, they have for too long been the poor relation in cancer research. That is why improvements in outcomes for brain tumour patients continue to lag so far behind results in better-resourced areas of cancer treatment.
I readily admit that preparing for today’s debate was an eye-opening experience, in large part because of the profoundly tragic and painful stories I received from constituents, but also because I learned that research into such a deadly disease received just 1.5%, or £7.7 million, of the £498 million national spend for cancer in 2014, and just 1% of the overall national spend since 2002. The charity Brain Tumour Research estimates that, at the current rate of national spending, it could take another 100 years to find a cure. How many more lives will be tragically cut short and how many more families bereaved during that period? The answer is not one we should countenance, so I have no hesitation in joining the e-petition signatories in calling for the Government to show leadership and ensure that brain tumours are treated as seriously as other cancers and that more resources are provided.
Through improved funding we can raise awareness of brain tumours and increase the number of early diagnoses. That in turn could increase the opportunities for research, allowing us better to understand the causes of this devastating disease and potentially to develop urgently needed treatments, which could improve survival rates and patients’ quality of life.
It is a pleasure to serve under your chairmanship, Ms Buck. I add my congratulations to those that have been offered to the hon. Member for Warrington North (Helen Jones), who spoke to the motion so powerfully.
In addition to the moving personal stories that some of my constituents have told me, one of my motivations for speaking today is that I am proud to have in my constituency the national head office of the charity Brain Tumour Research. I pay tribute to Sue Farrington Smith and her team for the incredible work that they do. Earlier this year, I had the great privilege of attending their launch event and open day in their new Milton Keynes offices. I urge colleagues to visit them if they get the opportunity. Mine was an inspirational visit. I saw the passion and determination that the staff, volunteers, clinicians, family members and supporters put into securing better research funding, better and earlier diagnoses, and support for patients and their families.
The debate shows the value of the petitions system. I was at the office a day or two before the deadline for registering, and signatures were just below the 100,000 level. Great excitement was palpable as the number neared the magic threshold. The system works.
I want to make two brief points about the substance of the debate. First, I echo the Committee’s call with respect to funding priorities being set by research bodies. I agree with its conclusion that research gaps cannot be the sole responsibility of the voluntary sector. The Government have a leadership role too. The National Cancer Research Institute partners have an invaluable role to play, but we cannot over-rely on them. I hope that one of the Minister’s takeaways from the debate will be to have a fresh look at the Government’s role in identifying and addressing funding gaps.
I hope that the other point I want to make is not naive. It is about the diagnostic procedure. I have no medical background, but in the six years I have been a Member I have encountered a range of medical conditions, including some cancers—such as pancreatic cancer and neuroblastoma, which tragically took away the life of my young constituent, Henry Allen, at only four years of age—and other diseases that are not cancers, such as Niemann-Pick type C, that all have symptoms that can be difficult to identify. The research, treatment and cure will be unique to each condition, but I have found that they share a common problem of late diagnosis.
The symptoms are often not readily connected to the condition and may be general, such as nausea, pain and fatigue. GPs may see only a handful of such cases throughout their careers. Often, there is a lengthy process in which a condition is dismissed. It is often A&E, as we have heard, that makes a diagnosis later on. Alternatively, there may be a lengthy ping-pong between the GP and the consultant to find out what the condition is not, but without finding out what it is. Surely we can find a better system of diagnosis. When the obvious causes of a symptom have been ruled out, the patient could be sent for a comprehensive MOT to find out what is wrong more quickly. Funding cannot be the issue. How much money is wasted by that constant back and forth?
Earlier diagnosis is important for treatment, as well as in the search for a cure, through tissue being given for research purposes. There is so much more that could be done. I wish I could expand on that point, but I hope that the Minister responds to what I have said.
I congratulate the hon. Member for Warrington North (Helen Jones) on securing the debate, which, as we have seen, is important.
Like other hon. Members in the Chamber, I lost a good friend to brain cancer. She was aged just 41, and it is no consolation to Joy’s parents or husband, or indeed to her good friends, that she had 30 years more life than Danny Green, who was spoken of so passionately by my hon. Friend the Member for Castle Point (Rebecca Harris). Anyone who has read the book by Danny’s parents, Chris and Lisa Green, cannot fail to be moved by their story.
A cancer diagnosis of any type is not news that anyone wants to hear, but brain cancer affects those under 40 disproportionately, and funding must be increased. The arguments for extra funding have been rehearsed many times: symptom recognition, early diagnosis, more investment in research, targeted treatment—they all take funding. However, as we have heard, it is also partly the responsibility of the research institutes to make their bids for funding in this important area. One problem is that it is not recognised that funding is there. We need to change that, and today’s debate will help. I hope that raising the profile of the need for funding for research on brain tumours, through the petition and today’s debate, will trigger more funding requests.
I have mentioned before in debates, and I am sure this will not be the last time I do so, that we must break down the silos that exist not only in the NHS and social care, but in research departments. It is important to consider the long-term cost to individuals and to the health service and social care if we do not invest in research. I request that the Minister look at the health economics to see what we can do and how much more money we can invest, because that will save so much more long term. The long term is important with regard to individuals and the cost of supporting them, because the nature of the treatment and the site of the cancer mean that many are left with lifelong disabilities and need a tremendous amount of support. Some of that support is offered by our amazing hospice movement, such as Treetops in my constituency, which provides incredible hospice care.
As my right hon. Friend the Prime Minister outlined last week, spending on cancer research has gone up, but today the question is how that is distributed. I ask the Minister to do whatever he can to ensure that brain cancer gets its fair share of that increased spending and that it moves up the agenda, so that there is more investment in the research and development of new drugs and new ways of treating these people, who are predominantly young people with their lives ahead of them.
It is a pleasure to serve under your chairmanship, Ms Buck, and a privilege to be able to contribute to the debate on the Petitions Committee report. I commend the Committee for its work and for the interest it has generated in the debate. I hope that that interest demonstrates to the Government what a vital issue this is for many people across the UK, and I sincerely hope the Minister will take away the points made today and consider what more can be done to fund research into brain tumours.
I have to admit I was taken aback by how many emails I received on the issue, asking me to attend the debate. It was eye-opening to learn how many people in West Aberdeenshire and Kincardine have been affected by brain tumours, which I knew little about, and after listening to the debate I realise that I still have a lot more to learn. I am incredibly grateful to those who wrote to me and took the time to share their stories and experiences of brain tumours. It would take much longer than four minutes to share all those stories, but I will briefly talk about two of them.
The first story is that of Carolyn Toshney, who was the first person to raise the issue of brain tumours with me. After returning from a skiing holiday in 2009, her now-husband Mark collapsed at work and had a number of seizures. After initially being treated for meningitis, it was discovered that Mark had a brain tumour. He then underwent surgery to remove 90% of the tumour, which was initially thought to not be cancerous. Unfortunately, a few weeks later, it was confirmed that the tumour was cancerous, and Mark underwent months of chemotherapy.
Since Mark’s diagnosis, Carolyn has worked tirelessly to raise awareness of, and funds for, brain tumour charities, including by working with the Friends of the Neuro Ward ARI to help raise funds for the refurbishment of the neuro-ward at Aberdeen royal infirmary; I share the frustrations expressed by the right hon. Member for Orkney and Shetland (Mr Carmichael) about the ongoing delays to that. Carolyn also made a valuable contribution to the work of the Petitions Committee’s report.
Secondly, I will mention the situation of other of my constituents, who are parents. They shared the story of their young son who was diagnosed with a brain tumour at the age of four, just before starting primary school. Their son recently celebrated his fifth birthday in intensive care, unaware that it was his birthday, as he is still undergoing treatment. His story is incredibly moving and demonstrates how brain tumours can affect anyone, whatever their age, health or any other factor. Brain tumours do not discriminate. I want to share what they wrote to me:
“We don’t know what the future holds for our little boy, but we do know that we want to help change the future for other children like our son.”
As has been mentioned, for illnesses such as brain cancer, achieving accurate and early diagnosis is often the biggest barrier to effective treatment, which is why I welcome, as my hon. Friend the Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) mentioned, the Scottish Government’s new cancer strategy, which allocates an extra £10 million to support swift access to diagnostics for people with suspected cancer. The Petitions Committee report highlighted how early diagnosis could improve the opportunities for research, because it would increase the availability of tissue samples from earlier stages of the disease, and enable a larger number of brain tumour patients to take part in clinical trials.
I once again congratulate the Petitions Committee on the report, and thank everyone who contributed and shared their experiences. I hope the Minister will listen carefully to what has been said today and act accordingly.
I add my congratulations to the Chair of the Petitions Committee, the hon. Member for Warrington North (Helen Jones), on the Committee’s excellent report, and to every Member on today’s thoughtful debate. I pay particular tribute to colleagues who spoke movingly about their own experiences or those of people close to them.
I will briefly mention one of my own constituents, but first echo the comments of my hon. Friend the Member for North Dorset (Simon Hoare) about Sacha Langton-Gilks. It is clear that someone is a dedicated and doughty campaigner when they not only attend the surgeries of their own Member of Parliament, but pitch up at those of other Members. Sacha came to see me when I was a new MP—bringing with her the legal requirement, one of my constituents, who introduced her—and spoke incredibly movingly about her son, David. She also brought with her the HeadSmart cards and emphasised the importance of early diagnosis and the HeadSmart campaign, which seeks to bring awareness to schools, doctors and, particularly, parents. As a result of that meeting, I was able to introduce her to the leader of Hampshire County Council, who agreed for those cards to be distributed in Hampshire schools. Those cards are incredibly informative, outlining symptoms in an age-specific way and, above all, not provoking alarm; they just educate people. It is important that we increase awareness of brain tumours without instilling fear in people.
I, too, commend the HeadSmart cards, but does my hon. Friend agree that unless the medical profession is more aware of brain tumours we will run into the problem, as we have time and again, that it overlooks parents’ instincts in such cases?
I pay tribute to my hon. Friend’s work as chair of the APPG, and I will highlight exactly that situation with the case of a constituent. Brain tumours are not as rare as we might think; they are the biggest cancer killer of children. That is why I argue that research and knowledge are critical.
I received an incredibly moving letter from my constituents, Charlotte Swithenbank and James Butler, the parents of Alfie, who is not yet two years old and has been fighting his cancer for more than a year. As in many cases, Alfie was not initially diagnosed. It was not until his seventh trip to the doctor in just two weeks that he was referred to Southampton general hospital. Within 36 hours of admission, he was diagnosed with a grade 3 infant ependymoma, and he has since had more than 24 hours of surgery. He has also had chemotherapy.
Does my hon. Friend agree that there may be a correlation between a perception that brain cancers and brain tumours are somehow lower down the pecking order and the fact that GPs are less inclined to refer? They do not necessarily see them as part of the great initiatives of the Department.
To be brutally honest, I do not know, but I agree with the chair of the APPG that it is critical that the medical community be incredibly aware of such cancers and make referrals as quickly as possible.
Alfie has been for proton beam therapy in the USA and has lived in hospital for more than five and a half months of his short life. He is scheduled to have his MRI today, which is why his parents are not here; I am sure that they will catch up with the debate later. That MRI will, we hope, establish whether Alfie has gone into remission. We want that news to be positive, but as his mother, Charlotte, says, even if Alfie is now in remission, given the type of tumour he has, there is a 50% chance that it will return within seven years. As a family, they will live in fear even if he has gone into remission.
Charlotte also says that early diagnosis is key. It was her persistence in going back to the GP time and again, and refusing to accept that it was just an ear infection, that meant that Alfie’s diagnosis, in comparison with many, was relatively quick. That got him referred to an excellent children’s unit, which has helped him to have a fighting chance.
Charlotte has sought to convey to me how urgent this issue is. Unlike other cancers, the incidence of brain tumours is rising and the improvements in outcome that we have seen in other cancers have not been matched in brain cancers. In Southampton, we are incredibly lucky to have the Cancer Research UK unit located adjacent to the general hospital. MPs are invited there every year to hear about the work it does and to see graphs that show that, for the majority of cancers, treatment rates are more successful and incidence is going down. However, for brain tumours, those are going in the other direction; the cures have not been as forthcoming as for other cancers.
We are all here today to convey the message to the Minister that we want more investment in research in this field, so that more parents do not have to go through what Charlotte and James are going through, and more children like Alfie have the best possible chance of a positive outcome.
It is a pleasure to serve under your chairmanship this afternoon, Ms Buck. Along with others, I congratulate the hon. Member for Warrington North (Helen Jones) on introducing this debate. Maria Lester should also be congratulated on raising this issue; I do not wish to state the obvious, but without her petition there would have been no debate here today, so we would not have had the opportunity to share many personal stories and to raise this important issue with the Minister. It has also been an opportunity for me personally to learn more about this subject. As a newer Member of Parliament, I am still struck by how often constituents come to us and share their very personal experiences and stories with us; it is often very moving and very touching.
An earlier speech touched on people’s ignorance of this subject matter. In doing research for today’s debate and in sitting here listening, I, for one, have learned an awful lot—and I am sure I have an awful lot more to learn. As we heard today, the Petitions Committee released its report on funding for research in March. That report called for more investment in research into brain tumours and revealed the distress of many sufferers and their families whose lives have been devastatingly affected. It also helpfully explored the reasons behind the historical underfunding of research under successive Governments. I was quite shocked to read that brain tumours are the ninth most common cancer in the UK and they kill more children and adults under 40 than any other cancer—yet, while the incidence is increasing, there has been little extra allocated to research. That is one reason today’s debate is so important.
My hon. Friend makes powerful points. While I congratulate my constituent, Peter Jordan, on his efforts—he recently completed the Plymouth half marathon to raise funds for this cause—does she agree that, given the figures she has mentioned, what we need to see is real commitment from the Government to funding research?
I am grateful to my hon. Friend for his intervention. Yes, I do hope that the Government are listening today. We must continue to raise this matter. As a local MP, I recently read a heartbreaking email from a grandmother about her grandson. I then received an email from a mother, telling me about her son. At that point, it hit home that the grandmother’s grandson was the mother’s son. It highlighted to me that it is not just sons, daughters or grandchildren who are affected, but cousins, aunts, friends and colleagues; it extends way beyond the immediate family. Those emails compelled me to come along today and speak in this debate. The young boy sadly passed away, aged just 14, after surgery, chemo and radiotherapy, seven years after being diagnosed with a high-grade tumour. I cannot imagine how that family must have felt. Sadly, as we have heard from the many examples shared with us today, that family is not alone.
Charities, clinicians and scientists do amazing work. My hon. Friend the Member for Torbay (Kevin Foster) spoke about people who raise money through charities, doing sponsored runs, marathons and all manner of things for causes that are very close to their hearts. Yet, although technological advances help, brain tumours remain very difficult to treat and continue to take many, many lives each year—too many lives. I conclude simply by saying that I am looking forward to the Minister’s response, especially on how to raise awareness, how to improve research and, ultimately, how to improve the outcome for patients and their families.
Last Friday, I had the very great privilege of spending quite a long time with Peter Realf, who is here today with his family, at the University of Wolverhampton’s brain tumour research centre in my constituency. We discussed a range of things related to brain tumours with Professor John Darling and Professor Tracy Warr, who gave evidence to the Petitions Committee.
I want to make a couple of brief points to remind the Minister that money spent on generic cancer research—important though that research is—is often not applicable to brain tumour research. One cannot say that 3% of cancers are brain tumours and therefore 3% of the generic cancer research funding can be attributed to brain tumour research. There are about 120 different types of brain tumours. As Professor Warr herself pointed out to the Committee, that generic research is not applicable to many of the brain tumour situations. I repeat what she said to the Committee—it is quoted in paragraph 53 of the report:
“It is a very complex disease and a lot of the general non-site specific translational work from other tumours cannot be applied to brain tumours”.
Also, on the same page of the report, in paragraph 55 —this has been mentioned earlier in the debate but it bears repeating—the actual amount, as far as one can tell, that is spent on brain tumour research in the United Kingdom at the moment appears to be in the order of £2.2 million.
I asked Professors John Darling and Tracy Warr how big the brain tumour research community—for want of a better word—is in the UK and they said that it is in the order of 100 people—very specialist people. I asked them what the chances are of scaling up if, as we hope, we get a considerable increase in research funding from the Government as a result of pressure from both sides of the House. It is all very well the Government saying they are going to increase funding for brain tumour research—as I hope they will—but if the researchers are not there to do it, we cannot scale up in a short time; it is very complex work.
The professors told me and Peter Realf that we could scale up if, for example, the funding were doubled. Some have suggested that it should go up by £35 million, but if it is £2.2 million now and that were to double, we could scale up. The brain tumour research centre at the University of Wolverhampton—a national centre of excellence that does this work—is losing doctoral and post-doctoral students to other fields, such as that related to leukaemia, or to places such as Chicago, because the positions are not there for them in the UK. I ask the Minister to please consider this: we can scale up, we do have the skills there and we can double the research funding. It will cost about £2 million to £2.5 million a year to double the research funding—please do that.
I am humbled to speak after hearing so many moving personal stories. I am here because of Skye. Skye was five when he tragically died in August 2014, not from the medulloblastoma that he was diagnosed with but from the severe side effects of his treatment—the Milan protocol. We now know that a number of other children also developed similar side effects, and the Milan protocol has now been withdrawn. Skye’s mother, Sally, is here in the Gallery today and since his death his family have shown extraordinary courage, raising awareness of, and funding for, childhood brain tumours and setting up the charity Blue Skye Thinking to support research so that all children diagnosed with brain tumours have a better chance of survival. However, Skye’s story illustrates that, although much is working in childhood cancer treatment, some key areas are in need of urgent improvement.
As the hon. Lady knows, I lost my dear wife, Val, to secondary tumours and it is a year to the day since she started to have palliative care. I very much share what the hon. Lady said about Skye’s case. Does she agree that, more generally, there is a cruel paradox? Progress is being made in treating other cancers but, because of the blood-brain barrier, that increases the number of people who survive to get a brain tumour. That is a further compelling argument for more research.
The right hon. Gentleman, and friend, has made an important point and I hope the Minister will respond to it. However, we should note at this stage that the overall story of childhood cancer over the last 30 years is positive. Eight in 10 children with cancer survive five years or more, compared with just three in 10 during the 1960s. We should congratulate the Government on that because it is clear that the work and funding we put into fighting cancer is money well spent. As we have heard, unlike most cancers, brain tumours are on the rise and research is underfunded, and because the money spent on cancer is effective, we must put that right.
I want to focus on childhood cancers, for obvious reasons. Despite causing more than a third of childhood cancer deaths, brain tumours receive only 6% of childhood cancer funding. Childhood cancers account for less than 1% of cancer diagnoses in the UK and of that 700 children are diagnosed with a brain tumour every year. It is the most common form of cancer affecting children and the most lethal, killing 160 children every year.
We must consider childhood cancer funding in its own right because children’s cancers are biologically very different from adult cancers and to treat them effectively requires specifically tailored research and treatment. The effect of the funding shortage, ethical challenges and small cohorts mean that 50% of childhood cancers are part of a clinical trial and the remainder are treated using standard treatment guidelines such as the Milan protocol. There are risks with that approach.
As we have heard, cancer treatment is a brutal regime and can cause long-term disability. That is particularly true of childhood brain tumour survivors, 60% of whom are left with life-altering disability. In a few cases like Skye’s, these effects can be fatal.
My hon. Friend is making some powerful points, as other speakers have. Investment in this area is vital. The costs of caring for those lifelong disabilities as well as preventing deaths are why the Government should invest in this area—invest to save money in the long run.
My hon. Friend makes a good point. This is not a subsidy; it is an investment that will reap a return.
Currently, there is no formal infrastructure to collect and share data about standard treatment guidelines. Consultants working incredibly hard to save the lives of young patients struggle with their inability quickly to access information about the potential adverse effects of very tough treatment regimes. In all my correspondence about this with NHS England and others, the response is, “We’re trying, but it’s very difficult.” That is not good enough because all life-saving cancer innovations are difficult and, given the stakes, I simply cannot accept that the problem is insoluble. The architecture for collecting the data is in place, but the lack of formal data collection requirements and a single responsible body can have devastating consequences.
Currently, the National Cancer Registration Service and Public Health England are developing a pilot to improve data gathering and I welcome that, but it seems that it will be retrospective. It may yield research benefits, but it falls short of the real-time data necessary to guide clinicians. When Skye’s consultant noted that he was deteriorating fast, she could not easily find out whether any other children on the Milan protocol had experienced the same side effects and she was reduced to phoning colleagues ad hoc to ask their opinion one by one as Skye got worse. In the end, it was too late.
In so many ways, we are making tremendous strides in the UK in tackling cancer, including childhood cancer, but the absence of monitoring the adverse effects of standard treatment for childhood cancer can lead to lifelong disability and death. In an ideal world, all childhood cancers would be the subject of a full clinical trial, but we must recognise the challenges associated with research into childhood cancers where cohorts of rarer cancers can be incredibly small and ethical issues are more complex, making it difficult to recruit participants. This means that even with increased funding, which is clearly essential, some childhood cancers will have to be treated through standard treatment protocols.
I hope the Minister—I believe he is a man of action—will listen to the arguments that all of us here have made today about funding concerns and take action to rectify data gathering and standard treatment protocols. If those adverse effects are properly collected, recorded and shared, we may be able to avoid more cases like Skye’s and to increase survival rates of childhood cancers even more.
Thank you for calling me to speak in this debate, Ms Buck; it is incredible to see the Chamber so full. I pay tribute to the Committee and to the hon. Member for Warrington North (Helen Jones) for her incredible opening speech. As many hon. Members know, I am a breast cancer surgeon, so I have worked in a field that has seen a transformation since the ’70s. When I was a student, half our patients would survive, whereas now, about 85% of our patients survive. We have been the recipients of the benefit of research, but what we are talking about today is an area that seems just to have been forgotten.
Although people are talking about this being a rare cancer, we are still talking about 10,500 cases a year, the majority of which are not in young people. They will be in older people. The biggest impact is in those under 40, where it is the biggest killer. We have heard that only 20% will survive five years, but what is even scarier is that only 40% will survive one year. That means that the family have very little time to come to grips with the situation or even to get their head around what is happening to them. It is therefore important that as well as research, which is the topic of this debate, we look at the service that we provide.
I hope that this debate will raise awareness not just among parents, who obviously have been going to their GP, but among GPs. Doctors need to see HeadSmart cards, or go to lectures or be updated. They also need to feel enabled to refer someone to a specialist or to refer them for a scan, because we are hearing that, when things start to get more dramatic and someone gives in and goes to A&E, they are being diagnosed. Can we not move that out of A&E? The survival rates for people diagnosed in that way are much lower, yet 53% of those under 40 will be diagnosed in that fashion.
As well as there being a poor survival rate, 60% of younger people will be left with significant disability. For one third, there will be an impact on their personality. For a half, there will be an impact on memory. A quarter will lose cognitive function or have sensory loss. That means that this is not only about those who have lost life, but about those who have lost quality of life, for whatever life they have.
This is not just an illness of the child or adult with brain cancer, or brain tumours. As we have heard, it is a disease of the whole family and everyone who is connected with it. That is why support is important. In my constituency, there is Malcolm Sargent House, which is a hospice to support children and families with cancer—CLIC Sargent contributed to the briefings that many Members received.
We talk about brain cancer and brain tumours, but actually, we should say “brain tumours”, because although in other parts of the body, as with breast, we talk about “benign” and “malignant” and are delighted to get a benign diagnosis, that is not the case in the brain, because it is where we live. Therefore, even removing a benign lesion can have a huge impact on the person. That is where early diagnosis is important because the bigger it is, the more damage there will be with surgery, which is the key treatment for these patients.
We have heard about the difficulty of chemotherapy. The hon. Member for Warrington North mentioned the blood-brain barrier. That is simply a protective mechanism of the brain to stop the poison that is knocking around in the body from getting in there, but it means that the big molecules, which chemotherapy often are, simply cannot cross the blood-brain barrier.
The right hon. Member for Oxford East (Mr Smith) mentioned his wife developing secondary brain cancer. We see this in breast cancer now; we are so good at preventing liver and lung metastasis, the first sign of trouble can be someone presenting with brain metastasis. That is not even included within the type of patients we are talking about today. Those patients, however, do gain in the same way from increased knowledge about managing cancer or lesions in the brain.
As my hon. Friend the Member for East Kilbride, Strathaven and Lesmahagow (Dr Cameron) mentioned, since 2011 in Glasgow, there has been a large biobank at the Institute of Neurological Sciences, which is in the same campus as the New South Glasgow Hospitals. Many centres have biobanks. What is different about this one is that it is willing to provide tissue not just UK-wide, but internationally. Perhaps other UK biobanks could think about trying to receive and share samples with areas of the country that have no chance of having their own biobank. We read that only 30% of patients are able to donate a sample but that 90% would like to do so.
As others have recognised, this is not one disease. There are multiple sub-types, and there is a difference between childhood brain tumours and adult brain tumours, which means that, to have any meaningful research, we need to gather those small numbers together—that is not UK-wide but Europe-wide and internationally. One problem that has been mentioned is diffuse pontine glioma, which accounts for 80% of such deaths among young children. There is no treatment and no drugs; there is not even a trial. Part of what we need to do is not just funding but organisation. Representations about brain tumours need to be made on bodies, such as the Medical Research Council, that make decisions about funding.
The hon. Member for Erewash (Maggie Throup) mentioned breaking down the silos. In Glasgow, the Glasgow University brain tumour research fund not only brings in the ideas and contributions of front-line workers but is working with the tissue banks and biobanks to try to identify markers that might give us a prognosis or identify sensitivities to treatment. The institute is also considering the development of using chemotherapy and radiotherapy at the same time and of using MRI to plan that radiotherapy, because radiotherapy has an impact on people’s brain and cognitive functions thereafter.
Brain tumour patients have not had the chances that we would like to see for other cancers. We have heard about many charitable groups, and I pay tribute to my constituent Amy, whose father died at 65 of glioblastoma. She set up the Small But Mighty fund, which is simply getting friends together to run, cook, bake or do whatever to raise money for brain tumour research. The country is covered with people who have turned tragedy into something positive, but the Government are giving less money than Cancer Research UK to tackle brain tumours —£7.7 million against £9 million—which is not how it should be. Charities should be topping up and giving us wider or more innovative corners to consider, but the foundation stone needs to be Government research.
We have seen a change in mortality rates for cancers across the country, with a drop of 11%—I work in a specialty that has seen that drop. When we invest in better research, we will also have to commit to using the drugs or treatments that are developed. How often do we talk in this Chamber about the difficulty of accessing drugs for rare diseases? I call on the Minister to fund research and to remember that, when the research comes to fruition, we need to commit to using it. Other cancers have benefited, it is about time that brain tumours do, too.
It is a pleasure to serve under your chairmanship, Ms Buck. I also pay tribute to the work of the pensions committee—[Interruption]. Sorry, the Petitions Committee, not the pensions committee, and particularly its Chair, my hon. Friend the Member for Warrington North (Helen Jones). I have pensions on the brain because the last time we both attended a Petitions Committee debate in Westminster Hall we discussed the Women Against State Pension Inequality Campaign. I hope she forgives me.
By my count, we have had 31 contributions to this debate, which shows that there is a large degree of unanimity on this issue, and it shows the House of Commons at its best. Our constituents have recognised that there is an issue—I pay tribute to the petitioners: not just those who organised the petition, but the many constituents who signed the petition and who have lobbied us—and we have come here today to raise some important issues on their behalf.
I thank all hon. Members for their insightful and moving contributions this evening. I particularly commend the work of the hon. Member for Castle Point (Rebecca Harris), the chair of the all-party parliamentary group, who was obviously leading on these issues for some time before the debate. Like others, I congratulate Maria Lester and her family on the success of this e-petition. I think that is the reason why the Petitions Committee was established: so that we could delve in some detail into the issues that concern people outside the House and, in the case of this debate, those such as Maria Lester and all the other supporters who have come.
I thank Brain Tumour Research for its support, not just of the petition but of us as Members of Parliament. It has helped us to understand better some of the issues relating to brain tumours. The charity and its network of passionate supporters have been leading advocates in this area, and the work it has done in founding and supporting centres of excellence for the study of brain tumours has been quite remarkable.
As we have heard, in the last 40 years Britain has pioneered some of the most remarkable research into cancer. Our scientific research capability is the envy of the world and is the engine that drives the fifth largest economy in the world. Investigation of prostate cancer has seen significant improvement, with many drugs coming from Cancer Research UK, while the progress on breast cancer treatments, such as the UK-produced tamoxifen, has also seen fantastic improvements in survival rates. Those are just two examples of what well-funded research can do, and we can clearly see the benefits of that in survival rates. Over the last 40 years, British cancer survival rates have doubled, meaning that 50% of people diagnosed with cancer now survive for at least 10 years. That improvement can be traced to each pound spent on research. The money funds the years of lab work and the clinical trials that are essential for producing new treatments.
However, despite the undoubted success, some patients, tragically, have been left behind—in particular, many of the 16,000 patients who are diagnosed with a brain tumour every year. The five-year survival rate for brain tumour patients is under 20%. It is not widely known that brain tumours are the largest cancer killer of children and adults under the age of 40. Hon. Members have referred to that umpteen times in the course of the debate, but a lot of work still has to be done with the general public to raise awareness of just how serious this issue is. Those statistics are even more shocking when compared with the improvements in survival rates for other cancers.
We know that research better to understand cancers and find new treatments is the way to improve survival. That makes it even more shocking that brain tumours, which account for 3% of all cancer deaths in the UK, have received just 1% of national cancer research funding. The Petitions Committee report, which we have been debating, found that brain tumour patients and their families have been consistently let down by a lack of research. That compounds the pain and suffering that these vicious diseases already cause.
The Government have a responsibility to lead research and ensure that every patient, regardless of disease, age or background, has the chance to beat their cancer and live a full life. The Government can be an extraordinary instrument for good and should be at the forefront of shaping the future of science and medicine. The current level of research into brain tumours is a stain on what in general is one of the UK’s greatest strengths. It is essential that the Government make research into brain tumours much more of a priority than it is. We have heard that from across the House today.
The Petitions Committee report makes a series of recommendations that would undoubtedly make a phenomenal difference to the lives of thousands across the United Kingdom. The report calls for the Government to support young scientists who wish to pursue a career in brain tumour research. It calls for the removal of red tape and a clear statement on how usage of off-patent drugs can be widened. Those are excellent ideas that will make a significant difference. The recommendations can be supported by the creation of a national register of all current research to track all grants and current work, which will help to prevent duplication and increase the transparency of research taking place in the UK. I urge the Government and the Minister to accept the recommendations.
Before I finish, I want to raise two particularly pertinent points from the report. First, in order for the survival rate of brain tumour patients to catch up with other cancers, the Government must begin to prioritise research into cancers with lower survival rates and take into account the historical improvement in treatments. That is essential if we are to ensure that research is targeting the diseases and patients with the greatest need and the areas where the money can make the biggest impact.
Secondly, the Government must dedicate a consistent amount of money, far above the current level, to research into brain tumours. The charity Brain Tumour Research, which, as I have mentioned, champions research across the country, has estimated that between £30 million and £35 million a year over 10 years is needed to make a significant impact on brain tumour treatment. The Government must consider committing to a similar level of funding.
I hope that the Minister, whom I greatly respect, takes on board many of the points made not just by me, but by other right hon. and hon. Members from across the Chamber in this debate and in the excellent Petitions Committee report. It is the Committee’s first report, and undoubtedly not its last. I know that my hon. Friend the Member for Warrington North will continue to be a fastidious and assiduous campaigner on behalf of petitioners who raise issues that have not received enough attention in Parliament. I say to her that brain tumour research funding was an excellent choice for the Committee’s first report. We have had unanimity across the House today. It is now time for the Government to act.
I thank you, Ms Buck, and also your predecessor this afternoon, Sir Edward Leigh, for your excellent chairing of this debate. It has been a pleasure to serve under the leadership of both of you.
I echo many of the points made, not least those just made by the hon. Member for Denton and Reddish (Andrew Gwynne): today we have seen the House of Commons at its best, with strong cross-party support for those who put us here and who expect us to listen to them and work for them. I congratulate the Petitions Committee. One does not get to the Front Bench by rebelling against the Government very often, but I am proud that one of my first acts on arriving here as an MP was to vote for more Back-Bench powers, and I think that this is a great initiative. To see direct democracy in action, with the public petitioning the Government and bringing debates like this one, is—although challenging for us—a great thing.
I thank the Speaker for his support for the cause. I recently joined him at the Speaker’s Palace at a reception for Brain Tumour Research. He has quietly done a lot of work behind the scenes in support of that and other medical issues. I congratulate the hon. Member for Warrington North (Helen Jones) and thank her not just for her excellent speech, which framed and kicked off this debate, but for all the work she has been doing behind the scenes. Equally, my hon. Friend the Member for Castle Point (Rebecca Harris) has done extraordinary work behind the scenes to bring the subject to fruition.
It would be odious to pick out individual Members, but we have had some wonderful speeches. Having said that, I will mention my hon. Friend the Member for Hexham (Guy Opperman), who has spoken powerfully here and elsewhere. For those who are not aware, he collapsed with a tumour, which was luckily diagnosed quickly. It is a sign that Members of Parliament experience the things that we are sent here to deal with. The right hon. Member for Oxford East (Mr Smith) also spoke powerfully about his experience of diagnosis in his family, as did the hon. Member for Sheffield Central (Paul Blomfield). Disease does not respect party boundaries, and nor should we in tackling the issues that it throws up.
I want to mention Maria Lester, whose extraordinary campaigning work has fuelled much of the campaign and still fires behind the scenes, driving it with personal passion, energy and experience, as well as all the charities that have done and continue to do so much. Of course there is Cancer Research UK, but as is so often the case in my work, I see the work of the small charities, which survive on so little—on the contributions of patients and their loved ones, and on voluntary work: Brain Tumour Research, the Brain Tumour Charity, Marie Curie, the HeadSmart campaign, CLIC Sargent and Children With Cancer.
Most of all, I want to pay tribute to the patients and their families and loved ones whose experiences and whose pain drive this campaign and this issue. It is my great privilege as the Minister to see that across different disease areas, and today in the debate, and in your work, you are lifting a torch and joining a magnificent history of people who, through their suffering of disease, insist on our doing better and who drive campaigns and raise awareness, leading to increased funding. On behalf of all the right hon. and hon. Members who have spoken on your behalf, I want to say that you have spoken very clearly here today and I have heard you. As you know, Ms Buck—some people in the Public Gallery may not—Westminster Hall is often a magnificent forum for raising in the House issues of, shall we say, marginal interest in the House: important issues that do not command widespread support. Today we have seen this Chamber and the Public Gallery packed, and phenomenal interest online as well.
As the Minister for medical research, I know that what drives most patients when they experience a diagnosis is the knowledge—the reassurance—that their disease, their suffering and, in many cases, their death, will not be in vain. What people want is to know that their suffering will do some good, and through our extraordinary research and science infrastructure we are so often able to deliver on that promise. Most of the people I speak to say, “I just want to make sure that through my pain and suffering you are able to help prevent someone else’s; and if my experience of disease helps you to do that, I will have done some good.” I think that is the request that sits deeply underneath what has been said this afternoon.
There are many issues. There are issues to do with awareness, with research funding—clearly—with diagnosis and the care pathway, with treatment, whether surgery, chemo or radiotherapy, and with quality of life and aftercare. There is also a complex range of issues to do with the research, development, procurement and reimbursement pathway, with which I am dealing in a number of the reforms I am leading as Minister for Life Sciences.
It is true that there is no simple solution. It is true that there are lots of competing claims, believe me, on every pound that we spend. It is true that we all have responsibility. I worked in biomedical research for 15 years and none of the companies I ever worked with got anywhere close to working out how we get drugs over the blood-brain barrier. The brain is an extraordinary organ that sits in a privileged place in the body, and that makes it a difficult organ to treat and diagnose. In many ways, it is the last frontier of the extraordinary biomedical revolution we are living through. We have got to the point where we can pretty much take a heart out, strip it apart, replace most of the parts, put it back in and treat disease with an exquisite range of chemicals, but we are not at that stage yet with the brain.
It is equally true that we do not run the allocation of science and research spending on the basis of political lobbying—nor should we. We allocate the funding on the basis of applications, clinical excellence, need and academic excellence. But I believe it is also true that we are sent to this place to reflect the priorities of the people who put us here, and the debate has illustrated, in a loud, civilised, cross-party and non-partisan way, that there is an extraordinary call from people for the disease to be given higher priority. I believe that democracy is about people influencing us. I did not knock on 15,000 doors to come here and say, “We’re doing enough. We’re doing something, and that’s enough.” We need to do more, so I will today announce a package of measures that I hope will go some way to address the points that have been made.
Is not part of the problem that funding has been allocated on the basis of incidence—how often people get brain tumours—rather than on the basis of impact, as in the deaths caused and the life years lost?
The hon. Lady, with whom I work closely on a number of issues, makes an excellent point. There are a number of criteria that drive how funding is allocated, and that is one of the things we ought to look at. If I can get to the end of my speech, I will make some recommendations about how we might pick that up and look at it.
I want to announce today that the Government accept that we need to do more in this space, committing to a number of specific actions that reflect the concerns that have been raised, both here and in the Petitions Committee and the all-party group report. I suggest that I should convene in the Department of Health a task and finish group to examine a number of the issues that have been raised here today, and to ask a question. I do not believe that as a Government we are not doing enough. We have put £0.7 billion a year into the Medical Research Council, to do the deep science on the medical frontier. We have put £1 billion a year—ring-fenced—into the National Institute for Health Research’s clinical infrastructure. We are funding the genomics programme and putting £4 billion into digital health and the informatics that go around it. The question we should ask is: surely there is more we can do to help to make that resource and that infrastructure support this particular disease area? I will say a little more about why I think that case has been made and what we might do about it.
I will not repeat all the numbers—hon. Members have heard them—but about 4,000 brain cancer cases are diagnosed each year in this country, resulting in about 3,500 deaths a year. We all know that brain tumours are very complicated—there are about 130 different types of them—and the truth is that we do not know what causes most of these cancers. Old age is a risk factor, but as many hon. Members have said with great passion today, it is those children who are diagnosed who drive us. Four-hundred children a year are diagnosed, and we just do not understand or know exactly what is driving it. There are various hypotheses around genetic conditions and some exposures.
Unlike for most other cancers, brain cancer mortality rates have increased. According to figures from the Office for National Statistics, in the last 30 years the mortality rate for brain cancer has increased by 15% for men and almost 10% for women. Improvements in diagnostics and treatments have helped to improve short-term survival in adults, with around 49% of people diagnosed with brain cancer now surviving for at least a year, compared with around 25% 30 years ago. Long-term survival has also improved, with around 20% of people now surviving for five years or more, compared with around 10% 30 years ago. We have also recently seen an increase of more than 25% in GP referrals for magnetic resonance imaging for potential brain tumours, from about 30,000 to 50,000. Veterans of these issues will know that those are relatively small numbers over quite a long period, compared with the explosive pace of progress in a number of the other disease areas that we often discuss.
A number of Members have talked about early diagnosis, which is clearly absolutely key with this cancer, as with all cancers. Last year, a report by the independent cancer taskforce set out 96 recommendations, broadly covering six strategic priorities, including early diagnosis, and NHS England is working with partners to establish a new cancer programme to implement those recommendations. By the end of this Parliament, everyone referred with a suspected cancer will receive a definitive diagnosis or the all-clear within four weeks.
I will give way to the hon. Gentleman, because he is a doughty pursuer of mine.
I thank the Minister for his response. Will he set out the funding or help that he can give to universities? He knows I am very keen on that issue. Universities have put forward some very good medical initiatives and some new medications and medicines as well, and Queen’s University Belfast is one of those universities. Can we do more with universities, business and Government? If we can, we can find the cure, which would be a big step forward.
I think we can do more and I welcome this opportunity to praise the role of Queen’s University Belfast in this field; it is a centre of real excellence in cancer science.
The standard treatment by the end of this Parliament will be underpinned by a commitment of an extra £300 million from Government in diagnostics. Last June, the National Institute for Health and Care Excellence published updated guidance on cancer referrals, which will make it easier for GPs to think about the possibility of cancer much sooner and to refer people for tests more quickly. This guidance includes new recommendations about brain cancer in adults, children and young people.
We are investing substantially in research. That is not to say we are doing enough—I will come to that in a moment—but we are investing £1.7 billion every year in health research. I am delighted that in the last autumn statement my right hon. Friend the Chancellor ring-fenced our investment, despite some difficult public spending pressures. We spend £0.7 billion a year on the MRC and £1 billion a year on the NIHR’s clinical infrastructure across the NHS. Cancer research spend by the NIHR rose by over a third during the last Parliament to around £135 million a year. Most of that investment—around £115 million—is on infrastructure. The model is that industry and charity can then run research projects through that infrastructure—I will come back to that point in a moment. That investment supports translating scientific breakthroughs into benefits for patients.
Spend specifically on brain tumour research cannot currently be separated out from total spend data for the cancer research infrastructure. I can, reassuringly, share with colleagues the information that six of our 11 NIHR biomedical research centres are conducting brain tumour research, and that the NIHR clinical research network had 30 brain tumour research studies that were recruiting patients in 2015-16. The NIHR is also funding research programmes and fellowships. For example, the health technology assessment programme is funding a £1.4 million trial involving patients who have received surgery for atypical meningioma.
The other main Government fund for health is the MRC. Over the five years to 2014-15, the MRC spent £10.9 million on research into brain and pituitary tumours, which spans basic discovery science, translational projects and early clinical trials. Both the NIHR and MRC also fund the Clinical Practice Research Datalink—the CPRD —which shares data for research. Four brain tumour studies have been published using CPRD data.
I want to mention the important role of charities. Those that follow my work will know that I have recently opened the door and made what has been described as a bold, generous and comprehensive offer to the Association of Medical Research Charities to come to the top table in the new landscape of life science research co-ordination that I am putting place. Medical research charities in this country raise £1.4 billion every year for research, from the smallest charities on the high street to CRUK, which has now become a major strategic funder and shaper of cancer policy.
I welcome the work that the 18 major charitable and public funders of cancer research are doing in the UK through the National Cancer Research Institute. Through that work and the work that the NIHR is doing with research councils, increased brain tumour research investment by charities drives increased support by the NIHR. Here is the challenge: our system works on the basis of bids and of accelerated funding. Once funding starts to drive clinical and academic results, that generates more funding, which drives more research. The danger in that model is that, unless that initial critical mass can be achieved, things can get squeezed out.
We have invited a number of applications for experimental cancer medicine centre status over this funding period, which are funded by the NIHR and Cancer Research UK. I am delighted to be able to announce that, on behalf of the arm’s-length bodies, NHS England will next month publish an implementation plan for the cancer taskforce strategy, “Achieving world-class cancer outcomes”. As part of one of the specific recommendations in that strategy, Public Health England is investigating how we can use new and existing data sources to identify secondary cancers and cancer progression more generally, including for brain tumours.
I hope I have demonstrated that some progress is being made, but as I have said, I do not think that progress being made is a reason not to do more; I think hon. Members have made a powerful case that we should. We formally accept that more needs to be done. The case has been made that we need to look carefully at what we can do. As the report recommends, I will be asking the NIHR to look at publishing a national register that considers how we spend public funds across research of different disease areas and different organs by therapeutic area, not least because it is a powerful way of helping to draw in co-investment from industry and charities. I shall be raising those issues with the MRC and, having recently convened the NIHR Parliament day, suggesting that at next year’s NIHR Parliament day we come back with that register and that breakdown of information.
We should look at issues around earlier diagnosis. I am prepared to announce today that we should specifically include brain cancer in the Genomics England programme, which is dealing with rare diseases and cancers, to make sure that it is properly picked up, and to talk to NICE about the point made about its guidance procedures. To pull all this together, I want to suggest that I should convene a task and finish working group in the Department of Health to touch on other issues that have been raised, including data collection, trials, off-label drugs, research barriers and skills.
I am conscious that I need to leave the sponsor of the debate a few seconds to close, but I hope that colleagues will see in my response that I have tried both to give patients some hope that we are listening and to strike a blow for good democracy, as well as good medical research.
In the few seconds available to me I would like to thank all hon. Members who have spoken today, particularly those who were willing to share their individual stories, because that is a terribly difficult thing to do.
This debate and the inquiry that we conducted have been a vindication of the Petitions Committee process, and of our decision to take on inquiries into petitions. We have heard some encouraging words from the Minister today; we will look forward to hearing further from him. It is fair to say that we are now on the march; I hope in the future we shall continue with that.
Motion lapsed, and sitting adjourned without Question put (Standing Order No. 10 (14)).