Brain Tumours

Helen Jones Excerpts

Monday 18th April 2016 Westminster Hall

[Helen Jones (Warrington North) (Lab)]

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.

[Derek Twigg (Halton) (Lab)]

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?

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[Helen Jones]

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.

[Mr Jim Cunningham (Coventry South) (Lab)]

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?

[Helen Jones]

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.

[Dr Julian Lewis (New Forest East) (Con)]

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.

[Helen Jones]

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.

[Kit Malthouse (North West Hampshire) (Con)]

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.

[Helen Jones]

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.

[Sir Gerald Howarth (Aldershot) (Con)]

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.

[Helen Jones]

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.

[Nadhim Zahawi (Stratford-on-Avon) (Con)]

Will the hon. Lady give way?

[Helen Jones]

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.]

[Sir Edward Leigh (in the Chair)]

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.

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[Helen Jones]

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.