Brain Tumours

Philippa Whitford Excerpts

Monday 18th April 2016 Westminster Hall

[Dr Philippa Whitford (Central Ayrshire) (SNP)]

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.

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[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

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.

[Dr Philippa Whitford]

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?

[George Freeman]

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.