Brain Tumours

Jim Shannon Excerpts

Monday 18th April 2016 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Member for Warrington North (Helen Jones) on her detailed and concise presentation. I am here because my constituents have contacted me. I suspect that is why we are all here: we have poignant personal stories to share.

Brain tumours kill more children and young adults than any other form of cancer. Every day, 10 children and young people in the United Kingdom learn that they have cancer. More than 16,000 people are newly diagnosed with this form of cancer each year in the United Kingdom, yet just 1% of the national spending on cancer research is allocated to this horrendous disease. I am glad to see the Minister in his place; I always look forward to his responses. I am sure that he will respond in a positive fashion and give us the hope for which everyone in this Chamber wishes, along with our constituents.

The allocation of funding is even more alarming when we consider the survival rates for brain tumour patients. Breast and prostate cancer patients, to give two examples, have an 80% five-year survival rate, compared with that of brain tumour patients, which is less than 20%. Clearly, more needs to be done on investment in brain tumour research. Can the Minister indicate what partnerships he is encouraging between universities, Departments and big business to ensure that we can move forward?

[Gavin Robinson (Belfast East) (DUP)]

Our colleague the hon. Member for North Down (Lady Hermon) could not be with us today, but she lost her sister, who was completely asymptomatic, at the age of 37. That reinforces the point that discovery often occurs too late, which is why research and awareness are crucial.

[Jim Shannon]

As always, I thank my hon. Friend for his intervention.

Secondary or metastatic brain tumours are particularly important to consider. Up to 40% of cancers in other parts of the body will eventually spread to the brain. Let us focus on the key issues, such as the blood-brain barrier.

The National Cancer Intelligence Network found that 61% of brain tumour patients were diagnosed in accident and emergency, including 53% of children up to 14 years old, 25% of those aged 15 to 24 and 20% of older adults. Although there are many charities, I will put in a quick plug for CLIC Sargent and its work. Its paper, “The Best Chance from the Start”, found that the rarity of cancer in children and younger people, added to the fact that symptoms can be non-specific, can make it challenging for GPs to recognise the symptoms.

Many constituents have written to me, but I will conclude by quoting two. One is my constituent Mary Patterson, a survivor. She was diagnosed, she had surgery and she is alive today, although her life is restricted. Another story involves a lady in my constituency called Heather, who writes about her late husband George:

“My own interest in this petition and upcoming debate came about because my husband, George Ramsey, died 1 July 2011 from a brain tumour, only nine weeks after diagnosis. He was just 50 years old, and had just retired from the fire service after 32 years of service. Unfortunately my husband received poor management from the neurosurgery department, and his treatment was delayed after the team ran out of time to discuss his case on two separate occasions.”

An ombudsman investigated and reported to the Assembly. I conclude with this comment of hers:

“In his last five years in the fire service, he was the community liaison and youth engagement officer for the Belfast area. The chairman of the Belfast City Council stated that George’s work had ‘made Belfast a safer place’.”

That is a touching and personal testimony. The sad thing is that it is happening to families up and down the country at this moment. Although we have the opportunity to get back on track, it is sad that it took a petition to bring us here.

--- Later in debate ---

[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.

[Jim Shannon]

rose—

[George Freeman]

I will give way to the hon. Gentleman, because he is a doughty pursuer of mine.

[Jim Shannon]

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.

[George Freeman]

I think we can do more and I welcome this opportunity to praise the role of Queen’s University Belfast in this field; it is a centre of real excellence in cancer science.

The standard treatment by the end of this Parliament will be underpinned by a commitment of an extra £300 million from Government in diagnostics. Last June, the National Institute for Health and Care Excellence published updated guidance on cancer referrals, which will make it easier for GPs to think about the possibility of cancer much sooner and to refer people for tests more quickly. This guidance includes new recommendations about brain cancer in adults, children and young people.

We are investing substantially in research. That is not to say we are doing enough—I will come to that in a moment—but we are investing £1.7 billion every year in health research. I am delighted that in the last autumn statement my right hon. Friend the Chancellor ring-fenced our investment, despite some difficult public spending pressures. We spend £0.7 billion a year on the MRC and £1 billion a year on the NIHR’s clinical infrastructure across the NHS. Cancer research spend by the NIHR rose by over a third during the last Parliament to around £135 million a year. Most of that investment—around £115 million—is on infrastructure. The model is that industry and charity can then run research projects through that infrastructure—I will come back to that point in a moment. That investment supports translating scientific breakthroughs into benefits for patients.

Spend specifically on brain tumour research cannot currently be separated out from total spend data for the cancer research infrastructure. I can, reassuringly, share with colleagues the information that six of our 11 NIHR biomedical research centres are conducting brain tumour research, and that the NIHR clinical research network had 30 brain tumour research studies that were recruiting patients in 2015-16. The NIHR is also funding research programmes and fellowships. For example, the health technology assessment programme is funding a £1.4 million trial involving patients who have received surgery for atypical meningioma.

The other main Government fund for health is the MRC. Over the five years to 2014-15, the MRC spent £10.9 million on research into brain and pituitary tumours, which spans basic discovery science, translational projects and early clinical trials. Both the NIHR and MRC also fund the Clinical Practice Research Datalink—the CPRD —which shares data for research. Four brain tumour studies have been published using CPRD data.

I want to mention the important role of charities. Those that follow my work will know that I have recently opened the door and made what has been described as a bold, generous and comprehensive offer to the Association of Medical Research Charities to come to the top table in the new landscape of life science research co-ordination that I am putting place. Medical research charities in this country raise £1.4 billion every year for research, from the smallest charities on the high street to CRUK, which has now become a major strategic funder and shaper of cancer policy.

I welcome the work that the 18 major charitable and public funders of cancer research are doing in the UK through the National Cancer Research Institute. Through that work and the work that the NIHR is doing with research councils, increased brain tumour research investment by charities drives increased support by the NIHR. Here is the challenge: our system works on the basis of bids and of accelerated funding. Once funding starts to drive clinical and academic results, that generates more funding, which drives more research. The danger in that model is that, unless that initial critical mass can be achieved, things can get squeezed out.

We have invited a number of applications for experimental cancer medicine centre status over this funding period, which are funded by the NIHR and Cancer Research UK. I am delighted to be able to announce that, on behalf of the arm’s-length bodies, NHS England will next month publish an implementation plan for the cancer taskforce strategy, “Achieving world-class cancer outcomes”. As part of one of the specific recommendations in that strategy, Public Health England is investigating how we can use new and existing data sources to identify secondary cancers and cancer progression more generally, including for brain tumours.

I hope I have demonstrated that some progress is being made, but as I have said, I do not think that progress being made is a reason not to do more; I think hon. Members have made a powerful case that we should. We formally accept that more needs to be done. The case has been made that we need to look carefully at what we can do. As the report recommends, I will be asking the NIHR to look at publishing a national register that considers how we spend public funds across research of different disease areas and different organs by therapeutic area, not least because it is a powerful way of helping to draw in co-investment from industry and charities. I shall be raising those issues with the MRC and, having recently convened the NIHR Parliament day, suggesting that at next year’s NIHR Parliament day we come back with that register and that breakdown of information.

We should look at issues around earlier diagnosis. I am prepared to announce today that we should specifically include brain cancer in the Genomics England programme, which is dealing with rare diseases and cancers, to make sure that it is properly picked up, and to talk to NICE about the point made about its guidance procedures. To pull all this together, I want to suggest that I should convene a task and finish working group in the Department of Health to touch on other issues that have been raised, including data collection, trials, off-label drugs, research barriers and skills.

I am conscious that I need to leave the sponsor of the debate a few seconds to close, but I hope that colleagues will see in my response that I have tried both to give patients some hope that we are listening and to strike a blow for good democracy, as well as good medical research.