Oral evidence: Funding for Research into Brain Tumours, HC 554Tuesday 3 November 2015

Oral evidence, 3 November 2015.

Witnesses

Sarah Mee, Head of Policy and Campaigns, The Brain Tumour Charity, Sue Farrington Smith, Chief Executive, Brain Tumour Research, Neil Meemaduma, Research Grants Manager, Children with Cancer, and Emma Greenwood, Head of Policy Development, Cancer Research UK, gave evidence.

Chair

Can I welcome our next panel of witnesses here: Sue Farrington Smith, Chief Executive of Brain Tumour Research; Neil Meemaduma, Research Grants Manager at Children with Cancer; Sarah Mee, who is Head of Policy and Campaigns at the Brain Tumour Charity; and Emma Greenwood, who is Head of Policy Development at Cancer Research. Thank you all for coming. We are going to get straight into questions. I know that some of you may have other things that you want to say and I would be grateful if you would submit that as written evidence because of the lack of time. I want to begin by trying to dig into this question of funding a little bit. The petition told us that only 1.5% of national cancer research funding is spent on brain tumour research; the Government says it is 3.3% of site-specific funding. Of course those are two different figures based on two different ways of assessing it. Are the records accurate enough to tell us exactly what is being spent on this area? Sue.

Sue Farrington Smith

The records in the public domain predominantly come from the NCRI and that is made up of the research spending of 22 partner organisations, of which seven are Government funded and the rest are charitable organisations. In that respect I think the total spend will be accurate because I know they collect that data on an annual basis.

Emma Greenwood

The important point here is almost whichever way you cut it—and obviously different people have different mechanisms for assessing site-specific spend on tumour types versus how much of a contribution you could allocate for more basic biology—it is clearly not enough and there needs to be an ambition to grow both the quantity and quality of research in this area.

Chair

Neil, do you have any comments on that?

Neil Meemaduma

The NCRI is a great resource for all of us as charities to determine how much is spent on different types, so we do need it and they provide a great service for us. It is true that the data can be analysed in different ways and that brings in levels of complexity, so if that can be improved then we can drill down to what is being spent on different cancer types.

Sarah Mee

I would echo the comments already made about the value of the NCRI data. The only thing I would add to that is that it does exclude some spend from smaller charities as well as any spend by industry, but it is certainly a good indicator of scale of the spend that is in existence.

Chair

Sue, did you want to add to that?

Sue Farrington Smith

It also excludes research funding at actual universities and hospitals where they receive funds and private donations outside of charitable.

Chair

The answer is that we can do an estimate but it is not 100% accurate?

Sue Farrington Smith

Yes.

Chair

But you all agreed, I think, from listening to you, that there is not very much spent on this area, is that right, in comparison?

Sue Farrington Smith

Totally.

Chair

Emma, how much does Cancer Research receive in funding each year, roughly?

Emma Greenwood

In terms of our income generation, I would have to pull the exact figures for the last financial year and send those in. It is all from the generosity of the British public, we do not get any Government funding. It varies year on year, but it is somewhere in the region of just over £400 million. That, by and large, comes into a central pot, as such, so people do not tend to give us money that is directed to one particular cancer type or other, although there are sometimes some exceptions to that rule.

Chair

Sue and Sarah, how much do you get in funding in your charity each year? You can give us the figures in writing if you like, but I am just looking for a rough estimate at the moment.

Sue Farrington Smith

Brain Tumour Research was started in 2009. In our first year we raised £6,000; in this current year we are hoping to raise £3.5 million.

Sarah Mee

Again, I can confirm in writing, but our ballpark income for the last financial year was in the region of £7 million. In order to meet our commitments that we have set out in our next five-year strategy, we will be looking to grow that to around £12 million over the next five years.

Chair

Neil, how much does your charity receive?

Neil Meemaduma

We are spending approximately £6 million in research grants.

Chair

Of that then for cancer research, Emma, how much is spent in the area of research on brain tumours?

Emma Greenwood

If we look at our annual reports for 2014-15, our brain cancer spend was £9 million. Last year when we published our new research strategy, which I think is referenced in the Government response to this petition, we looked to essentially increase both the quantity and quality of research that we funded across four key cancer types that we felt represented cancers of unmet need. Brain is one of those, but also lung, oesophageal and pancreatic. All four of those represent quite similar challenges, I suppose, in terms of late diagnosis of the disease, lack of treatment options and so on, so we have already identified that over the next five years we want to do much more in the area of brain.

Chair

Neil, how much of yours is spent on that?

Neil Meemaduma

To preface this answer a little bit, we have undertaken over the last couple of years our own analysis of childhood cancer specifically and brain tumours within that. We have our own set of figures and issues around that, which is separate, but what has derived from our analysis is that there was a large deficit in brain tumour research. We launched our own brain tumour initiative that looked to spend £3 million in three years. This is our largest initiative that we have definitely committed behind and we are looking to spend that across collaborative brain tumour research in the UK, so that is a substantial amount of our research budget going towards that.

Chair

Thank you, that is very helpful. Is any one of you able to help the Committee by telling us what proportion of cancers in adults and in children—we will look at them separately—are brain cancers compared to how much of research spend goes there? Does anyone know?

Sue Farrington Smith

If we look at today’s spend, it is catching up. With children, and we can obviously come back to you to confirm this, a third of cancers are brain tumours and with adults it would be between 1% and 2% are brain tumours. Obviously now that correlates with the spend, but that does not take account of the fact that it is the biggest killer of children, cancer killer, and it is the biggest killer of adults under the age of 40.

Sarah Mee

If I could just add to Sue’s comments, I do not think it is necessarily helpful to think of spend per case diagnosed or to think of it in those terms because the amount of investment that is needed to deliver results does not have anything to do with the number of people living with a particular tumour type.

Chair

Yes, we recognise that. We are trying to get some sense of which cancers are attracting the most funding and whether that is a sensible way to spend the money. Perhaps Sarah or Sue can answer this for me: the Government cites non-specific research as part of the spend. Can you tell us whether you think that kind of research is helpful in dealing with brain cancer or not?

Sue Farrington Smith

The big issue in dealing with brain cancer is the blood-brain barrier. Most standard cancer treatments cannot cross the blood-brain barrier so that is the big area that we have to focus our research on.

Sarah Mee

Even if you remove the non-site specific spend from the analysis, the level of spend on brain tumours as a proportion of site-specific spend is still only 3.3%, so even if you put that to one side, there is still a relatively low level of spend compared to the vast need of improvement that there is in this area.

Chair

The other bit of evidence that was given to us was that deaths from brain tumours appear to be increasing and we want to try to dig down a little into why that is. Is it that the incidence is increasing, in your experience, or is it simply that we are getting better at diagnosing them?

Sue Farrington Smith

There an element of both of those and also some brain tumours appear as a secondary cancer when they did not even know that the primary cancer was there in an individual in the first place. It is an element of both.

Emma Greenwood

If we look at cancer survival and compare current rates for five year or one-year survival with the 1970s there have been improvements in brain, but not as great as in other cancer areas. Brain was already so far behind almost that you do not feel the impact in the same way. We know that incidences are on the rise and so that overall mortality figure is probably mostly likely linked to that, because if you look at survival that is getting better. However, as Sue has already alluded to, we do not have great data currently on secondary, so we just need to understand that picture a little bit better.

Chair

Yes. Is that because the data is not collected?

Emma Greenwood

Yes. That is my understanding, yes.

Sarah Mee

I think some of the increase in incidence for brain tumours can be partly attributed to changing diagnostic and registration practices. For example, as diagnostic technology such as MRI became more common, then more brain tumours were picked up. Also my understanding is that there has been a change in registration practices between the different cancer registries over the last few decades, so there has gradually been a catching up in the number of low-grade tumours that are reported. That can account for most of the trend that is being seen in incidence, although not all of it. There are still some tumour types that that cannot fully explain the slight increase in incidence.

Chair

We can follow that up with some of the experts, but that is very helpful. I also want to raise with you this issue of research. We have had some very interesting evidence that we will want to explore further with some of the clinicians later on about there being very limited funding for PhDs in this area and for post-doctoral research. Therefore the deduction is that we have few experienced researchers in this area because people do not go into it to start off with. Sue, do you have any comment on that? Is that correct and why is it, do you think?

Sue Farrington Smith

Yes, I think that is absolutely the reason why we do not have people going into this area. We are talking at the moment about current spend, but if you were to go back since the NCRI started in 2002, the average spend on brain tumours has only been £3.8 million a year and it was much below 0.5% even. We are not attracting people into this environment and until recently researchers were having to scrabble around for money and rely on families to give them the money to do the research that they wanted to do in this area.

Chair

Does anyone else want to make any comment on that? Emma.

Emma Greenwood

Essentially this kind of goes to the heart of the issue, which is how do you transform a research environment in the UK that is currently just not established in this area in the way that everyone would like into something where you are seeing a stream of PhD students, you are getting clinicians wanting to run clinical trials? Our approach in the first year of our new research strategy is to focus on trying to get some real leadership in this area so that we can try to generate that long-term buzz about this area of science. We have recruited somebody internationally to lead one of our centres based in Cambridge. We are hoping that that sort of leadership might galvanise all the other levels of the research community, but obviously it takes time and that is the slightly frustrating thing about it.

Chair

Do other countries have better research establishments in this?

Emma Greenwood

It is an interesting question. If you look at the stats internationally I do not think there is any other country that you could say particularly does much better if you look at survival and those sorts of fundamental stats, which suggest that across the board nowhere is doing exceptional science in a way that is transforming patient outcomes, but we do know that there are some researchers in other countries that have chosen to focus on this area and we have to make the UK an attractive place for them to want to come and build our research environment.

Sarah Mee

If I could add to that, we have relatively fewer numbers of research active neurosurgeons in the UK than other countries and also there is a need for more medical oncologists sub-specialising in brain tumours and that will be important, for example, for driving early phase research trials. There is a workforce issue there.

Paul Flynn

The pharmaceutical companies: there was an interview this morning on the radio with a scientist who has gone to join the enemy, GlaxoSmithKline, who have a dreadful record on the way that they run their research, they have not reported negative findings and they were fined a huge amount recently in America. But he was making a very strong point about rare diseases and where they should go and trying to introduce a more ethical and a less commercial approach into the activities of the big pharma. I know you are looking for Government money, but is there any way of persuading the pharmaceutical companies to spend their vast resources on these cancers that have been neglected in the past?

Sue Farrington Smith

You have Nick Thomas-Symonds who has his Off-patent Drug Bill on Friday. I think that is a very good place to start and look at some of the drugs that are available that could be repurposed to help cure brain tumours.

Paul Flynn

We will all be here this Friday for Nick Thomas-Symonds’s vote on that. Is this a problem because of the way that the pharmaceutical companies have concentrated on the popular diseases of stomachaches and headaches and so on where they can sell millions and millions and neglected the rare diseases where their work could make major scientific advances?

Emma Greenwood

I cannot remember who made the point, I think it was Maria earlier, saying there is something about sharing information and data about what research has happened. That is absolutely an area with pharmaceutical companies and all of us as research funders where if we can share the results from clinical trials, even if we do not necessarily directly think it is relevant for certain tumour types, that could enhance everyone’s learning so that we are making the best of research that has already happened. The other thing is increasingly the role of the charity sector working with pharmaceutical companies. We have a technology transfer arm, we quite often take on drugs that the pharmaceutical companies are not interested in, have a look at them in a different indication because they are a strategic priority for us. Not everyone can do that, but the more that we can do that sort of collaboration the more opportunity for looking at some of these rarer cancers or these cancers of unmet need there will be.

Paul Flynn

You said in your evidence earlier that you want the amount in research to be put up, I think it was £35 million you suggested. Can you tell us how you reached that figure?

Sue Farrington Smith

It is simply that is the amount of money that has been spent on breast and leukaemia over the last 14 years and there are now cures and treatments. When my sister’s little girl, Alison Phelan, was diagnosed in 2001, at that time leukaemia killed more children than brain tumours, but the advances in treatments now is that 90% of children with leukaemia do survive, I think.

Paul Flynn

Are you all convinced that this is a neglected field, brain tumours, and that there does need to be an increase in the attention it gets? Is this a strong feeling that you all have? I know you have, Sue.

Sarah Mee

You only need to look at the outcomes for brain tumours at the moment to see that there is a clear need for improvement in survival and quality of life. Ultimately that needs to be research driven, although in turn that is dependent on the capacity issues that have been discussed previously, so you do need a strong research workforce to deliver the high-quality proposals to deliver that research.

Paul Flynn

Has anyone found the end of the piece of string somewhere that has some chance of leading to a cure for this or for remission of the disease or has there been little progress on the research for dealing with it over the years?

Sue Farrington Smith

There has been some progress, for example, in children’s medulloblastoma there is now greater survival and that is kind of what is skewing the numbers, but in many cases we are still at the very early stages. You have the issues of tissue, not having enough tissue to investigate, so we are sort of 20 years behind leukaemia.

Paul Flynn

You would approve of the system that is going to be introduced in Wales where there is an assumption that people’s bodies, after their death, can be used for research and the organs taken rather than the consent that is given beforehand? That would fulfil a need if there was ample access to tissue for research.

Sarah Mee

There are other issues that need to be addressed first around tissue collection. For example, having a co-ordinated system for biobanking in the UK would go a long way. At the moment, particularly for adult brain tumours, there is a fairly disparate collection of local tissue banks and it can be quite difficult to get the required tissue samples if you are looking at a particular tumour type to get enough numbers. There are around 140 different tumour types, so sample collection can be difficult without a good co-ordinated system.

Paul Flynn

I spent the morning at another committee with the Chair of the Charity Commissioners and charities are having a rough time at the moment for all sorts of reasons. I will ask Sue, how is the body that you head running? How is it financed and how do you do your fundraising?

Sue Farrington Smith

Our fundraising is all from the general public and mainly obviously from families that have been affected by a brain tumour. We receive no Government funding. A lot the charity-bashing relates to charities that have received Government funding in the past—I think we should segment charities—then there are others. I have forgotten my thread a bit.

Paul Flynn

Your involvement came with an incident involving the child of a friend of yours. Can you think of anything that you could be doing in your organisation to raise public awareness of these tragedies?

Sue Farrington Smith

That is exactly what we do. We have invested a lot of time in raising awareness. When Ali was diagnosed, there was very little in the media about brain tumours. I contacted my local MP, John Bercow, and we had the first-ever adjournment debate on the subject of brain tumours. The whole awareness of brain tumours is now much higher than it was 10 years ago, but it is certainly not as high as it needs to be in order to get the general public behind giving the funds to this disease area.

Paul Flynn

Just a final question, is the complexity of the various types of brain tumour a real obstacle to promising research? Do people say, “I am not going to spend the rest of my life doing research when there is little chance of an outcome that is going to affect a wide range of these brain tumours”?

Emma Greenwood

It may be slightly more complex than that, depending on what type of research you are talking about. At the more basic end of the spectrum, it might be that if labs are focused on one area already it is perhaps easier to see that there is a route there for a group and more research. If you are thinking about clinicians who are seeing patients but are also leading research projects they are completely motivated by doing things that are in the best interests of their patients that they see every day. Sadly, with brain cancer, it is one of those areas that is disproportionately affected by some of the regulatory hurdles you have to go through to set up a clinical trial in this country and we are getting new European legislation in, which we are optimistic will shift that so it is easier to set up clinical trials. But when you have such small numbers—and so recruitment is going to be challenging anyway—anything that gets in the way and presents a barrier to doing that is a disincentive to a clinician to getting that off the ground. I do think there is a role for regulatory bodies, the NHS more broadly, to have an open shop in terms of clinical research and making sure that we take every opportunity to be telling patients about possible research projects, sharing clinical trial opportunities across the whole of the UK.

Paul Flynn

I am grateful to you, thanks.

Chair

That is an interesting point that has not been raised before and one we will want to follow up, I think.

David Mackintosh

I wanted to talk about the impact on families. We heard a very compelling story earlier about the late diagnosis of someone. I just wondered in your experience if that is typical, if that happens very often and how they are impacted by it. In terms of the research that could be done, is that looking at a cure or is that looking at prolonging life? Your thoughts, please.

Sue Farrington Smith

Anybody that would have read the web thread will see that most of the stories are about late diagnosis. However, I know in 2006 when we campaigned for temozolomide to be available on the NHS, that was about extending life by four months. At the moment you can be diagnosed with a brain tumour, but there is still not the cure at the other end of it for those that get the most aggressive form. That is where we have to spend our money: what can we do once somebody has been diagnosed with it.

Neil Meemaduma

Diagnosis is definitely a problem. It is partly because these cancer types are so rare and it is particularly difficult for the diagnosis of children as well. As we heard, the symptoms can be misinterpreted, so it is tough. What is difficult is for a charity to invest in those diagnostics and treatments and also invest in the basic research that underpins these cancer types. It is often a real problem having this balancing act between we do need to drive forward the fundamental basic research in this area and we also need to have better treatments.

Emma Greenwood

There is some data from the NCIN that looks at routes to diagnosis, so where people are getting diagnosed in our health system. If you look at the proportion of people that tend to get diagnosed in A&E, which usually means they are at quite a late stage—they might have been to their GP a number of times or other healthcare professionals—it is disproportionately high in brain. I think that kind of reflects the challenge that we are facing from a research perspective. We could focus on potential biomarkers and understanding things to detect the disease earlier. We need to focus on our health system so that we are getting fewer people turning up in emergency rooms and more people, when they present at their GPs, their GPs understanding those signs and symptoms and getting a quick referral as well as treatment options further down the line. CRUK is doing a little bit of work with GPs via the RCGP that is looking at online learning modules so that we can help equip GPs, especially because they hardly see any cases in a given year, so they are a bit more tooled up. We have also got new NICE guidance that shifts the level at which you are meant to refer patients if you suspect cancer. It has only recently been rolled out, so there is a potential huge opportunity there in terms of education with GPs. You have to take a multifaceted approach and look at the areas that could have the most impact for patients across that whole pathway.

Sarah Mee

If I could just mention something that relates to the new NICE referral guidance, we have a campaign called HeadSmart, which we run in conjunction with the Children’s Brain Tumour Research Centre at the University of Nottingham, which raises awareness of the systems of brain tumours in children. That has been really successful so far, so before its launch in 2011 diagnosis times were more than 12 weeks and that has subsequently dropped to less than seven. Part of that campaign is the development of a clinical guideline for health professionals that the University of Nottingham developed, so that sets out to GPs which symptoms they should look out for. We are a bit concerned about the impact of the latest revision of the NICE guideline, the referral for suspected cancer guideline, because all of the detail within that on which symptoms should trigger a referral for brain tumours in children has been lost due to a change in methodology. Now we are a bit concerned about the potential conflict between the HeadSmart guideline, which is NICE accredited and endorsed by the Royal College of Paediatrics and Child Health, and the latest version of the referral for suspected cancer guideline.

Chair

That is interesting. Can I just ask before we go on to the next question, it is an interesting point, as someone who has been referred a couple of times for screening from my GP, just for the NHS to spend a lot of money proving I am extremely healthy. Is it lack of awareness among GPs, in your experience, or is it that the guidelines are wrong, that people are not being sent for scans through fear of the cost or anything else?

Sarah Mee

It is a difficult tumour type to diagnose because the conditions can often mimic those of other conditions, so things like headaches and so on. It might be a combination of that and awareness. It is a relatively less common tumour type, so most GPs might not necessarily see that many brain tumours during the course of their careers. Again, as I mentioned earlier, this new issue with a discrepancy between the new NICE referral guideline and the HeadSmart guideline, which is NICE accredited, may not help.

Chair

What is the discrepancy between the two; can you enlighten us on that?

Sarah Mee

The HeadSmart guideline sets out a number of symptoms that might be due to paediatric brain tumours and the updated NICE guideline, because they used a methodology using positive predicted values—so they looked at, for different symptoms, what the chances were that that could be due to a particular type of cancer—those symptoms are not listed as needing referral and so there is less detail in the newest version of the guideline than there was in the previous version.

Chair

Thank you, that is very helpful. I am told we are expecting a vote soon so I am going to bring in Oliver Dowden to ask his questions, hopefully before everybody disperses.

Oliver Dowden

Thank you, and please excuse me for missing most of this session. I did want to come back for the end just to ask you some questions. I just wanted to ask some more about this question of a lack of diagnosis and a lack of awareness for GPs. You talked about the lack of frequency of this occurring. Are there any other factors you think contribute to this? Are there failings in the teaching or are there further steps that can be taken to improve this diagnosis?

Sue Farrington Smith

It is interesting that so many cases come through opticians, so they are obviously being trained to look into it, although not all brain tumours can be diagnosed through optician referral. I think training is an element of it. My understanding is that an MRI scan is only £250 so I am not sure why people are not being sent for that in the first instance. My own sister’s little girl, it was six months before she was diagnosed and eventually it was an optician. We see week in, week out examples of SpecSavers in the paper who diagnose this, so I am not sure.

Oliver Dowden

Clearly opticians will be carrying out eye tests and will see those irregularities, but you would think it would be the other way around, the doctors—with all due respect to opticians—are far more qualified than an optician. How do you account for the gap in diagnosis?

Sue Farrington Smith

I do not know. It probably is a training issue. As we said before, they might only see one brain tumour patient in the whole of their career.

Emma Greenwood

There are some parallels with things like oral cancer, where we know that dentists are way better at picking up on some of these things and there is obviously something about—given the small number of people that GPs are likely to see and the types of symptoms being associated with so many other things—how can we best equip GPs so that they are educated, they have computer decision tools to help them spot people. There is also just culturally something in the NHS at the moment around referral for suspected cancer more broadly and our diagnostic capacity. That is across all cancers, it is not specific to brain, but we do have fewer workforce people that do these diagnostic tests. We have fewer bits of kit than any of our European counterparts that you look at that are comparable. There is a culture, because of finances, where we have seen that some CCGs are saying to their GP surgery, “Refer less”. With that as the kind of undertone and then the complexities that you layer on with brain, you can understand why it is increasingly difficult for the system to get people through quickly.

Oliver Dowden

When we are writing our report and making recommendations to Government about how we could improve diagnosis, what would be your number one ask, as it were, of something that could be changed in this regard?

Emma Greenwood

From our perspective, I think there is something quite broadly about positive messaging and reinforcing messaging to those people on the frontline around, “If you are not sure, refer. Refer to be on the safe side, get the tests done. Better safe that it is nothing as a diagnosis and rule something out” and also for there to be a specific focus on those kind of cancers that we are diagnosing quite late, around education for healthcare professionals.

Sarah Mee

I would also say sometimes if parents are quite clearly coming back to the GP more than once and are obviously particularly concerned, having confidence that they know their child better than anyone else, and again, if there is something wrong and if in doubt, then refer.

Oliver Dowden

On this point about the relative lack of funding of research into brain cancer as opposed to other types of cancer, how much do you think is accounted for by the small number of incidences of it and how much is just a generalised lack of awareness that is meaning that resources are being diverted more towards, for example, breast cancer where there is a very high level of public awareness?

Sue Farrington Smith

The public awareness is key to it, because I do not think the general public realise that cancer research is funded by charities. In NCRI, the budget for the MRC, for example, is only 20% of the overall spend, so the other 80% is coming from charities. Obviously that is something we would ask the Government to do in terms of increasing the MRC spend on brain tumours and encouraging spend there, but equally it is helping to raise awareness so that the general public put their hands in their purse. Maybe we need a celebrity to get a brain tumour, which is what happened with leukaemia. There is only one and a half times as many people get leukaemia as get a brain tumour, yet 7% of national spend is spent on leukaemia research.

Oliver Dowden

How does it break down in terms of age range? Is there a tendency towards younger or older people or is it fairly uniform across the—

Sue Farrington Smith

For brain tumours it is across the piece. In fact, it is one in 50 people who die under the age of 60 die of a brain tumour, and 75% of all brain tumour deaths are under the age of 70 compared to 47% of all other cancers.

Oliver Dowden

How much of that is preventable by early diagnosis?

Sue Farrington Smith

I am not sure about that, because I think early diagnosis might help people with the pain of trying to understand what is going wrong, but at the moment you would live with it for longer knowing that they will die at the end of it.

Neil Meemaduma

If I could just quickly say on the early diagnosis, like we heard before about Stephen’s case, although we can diagnose it earlier, the treatments that we have currently are limited and in order to develop those we need groundbreaking research here in the UK to drive forward novel, innovative treatments. That goes hand in hand with early diagnosis and new treatments.

Oliver Dowden

How do we compare to other countries? Forgive me if you have covered this already in the session.

Neil Meemaduma

The US and Europe are ahead of us, but in the UK we have tremendous research institutions and scientists here. We have the resources here to do this. It is a question of redirecting those resources and incentivising institutions to tackle this.

Chair

Although obviously you would all like more money to be spent on research in this area, you are saying it needs more than that, are you not? It needs a building up of capacity in research and it needs to incentivise people, as Neil said, to work in that area. Is that the case?

Emma Greenwood

It does definitely feel like it is kind of a medium, long-term gain and there are probably not that many quick fixes in terms of transforming the scale of spend and the number of projects overnight. Sadly, especially if you think about new treatments, one of the challenges is if you are diagnosing quite a lot of people quite late, and we have heard already about some of those shocking statistics about how many people do not even survive a year, then getting those people into clinical trials to develop new treatments, you can see that it is a kind of cyclical challenge. It is going to take building up that research platform across all of the areas that we have been discussing, as well as policy interventions within the NHS to kind of shift some of these barriers so that we reach that critical stage, then you would expect things to start to flow in terms of discoveries.

Chair

Can I just return to this issue about tissue samples, which you mentioned earlier? In your experience, are people not asked to donate tissue samples?

Sue Farrington Smith

The whole consent form process is a bureaucratic nightmare and a lot of people I know do want to give their tissue but find it difficult to give. We have had several instances of, “Can I give my brain when I have died?” and that is a bureaucratic nightmare. The whole biobanking needs to be addressed and I know again as charities we are trying to do that, but I think there could be Government intervention here.

Chair

Someone also referred to the fact—I think it was Sarah—that we need a biobank, that it is difficult to access the tissue that is donated for research.

Sarah Mee

It can be. There are local tissue banks at the moment, but each of those might have different procedures for accessing that tissue. If, for example, you are a researcher looking at a particular tumour type that is essentially quite rare, you might end up having to go to an awful lot of different places to try to get permission to access sufficient samples. In addition to that, you have the issue that was mentioned earlier around those samples not being systematically collected and then it does become quite difficult to sufficiently power research using samples.

Chair

We have both collection and ensuring that those samples are easily accessible? I do not want to put words in your mouth; I am just trying to make it clear to the Committee what we are looking at. Before we finish, can I ask each of you probably the most difficult question? If you could get Government to do one thing to start making the situation better, what would it be?

Neil Meemaduma

One of the issues with this particular type of cancer, as we have heard before, is it is like leukaemia was 20 years ago. What we are seeing with leukaemia is that there is an established research area and a well-developed research area; we do not have that necessarily for brain tumours. I would like to see investment in those fundamentals and infrastructure that can drive forward a basic understanding of the biology of what goes on.

Emma Greenwood

It is a bit of a fudge of an answer, but I suppose a clear signal to researchers that the UK is open for business. That can feed into various layers of policy, but we have a spending review coming up and while that looks at spend overall on science, I think it is a signal to the research community how seriously we take ourselves as a player in the scientific environment. If there are significant cuts to MRC, to NIHR, that is absolutely going to send the wrong message to the research community at large about what we want to be doing, and that will have a detrimental impact on these difficult areas that need supported infrastructure funding. When we as a charity want to do more research, if that is not backed up by investment from the NIHR, through the NHS or through funding councils, through the universities, it is going to make it increasingly difficult for us to shift that. I think it is about that overall signal that we are taking this seriously and we are open for business.

Sue Farrington Smith

We would look for the Government to ring-fence an innovation fund in order to look into this next generation and find some groundbreaking discoveries as well as support initiatives such as the Off-patent Drug Bill.

Sarah Mee

We would be looking to Government to commit to attracting and retaining a strong research workforce. It is all too easy to fall back on the kind of lines we saw in the response, there are streams of funding available through NIHR and other avenues, but they are not getting sufficient quality applications. If they keep saying that, we are going to retain the status quo, so we would want to see Government working with the research community to see what can be done to build research capacity.

Chair

Thank you very much indeed. I thank all our witnesses on behalf of the Committee. You have given us a number of issues that we want to look at further or we will want to pass on to other Select Committees in the House. We are very grateful to you all for taking the time to come here today and speak to us. If there is any other evidence you would like to give us that has not come out in this session, please feel free to put it in writing to us and we will look at it before we prepare our final report. Thank you very much indeed, and thank you also to all the other people who have come along today to listen or to give evidence. The session is closed. Thank you. Oral evidence: Funding for Research into Brain Tumours, HC 554 1