George Freeman announces measures to tackle brain tumours

18th April 2016

George Freeman announces a new package of measures including a task and finish group in the Department of Health to specifically address issues raised in the debate including  data collection, trials, off-label drugs, research barriers and skills. 

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 invidious 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 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 is 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.

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