Brain Tumours

Simon Hoare Excerpts

Monday 18th April 2016 Westminster Hall

[Simon Hoare (North Dorset) (Con)]

The outcome of today’s debate is an incredibly simple one for my hon. Friend the Minister and the Department. It is to step up to the plate that the hon. Member for Warrington North (Helen Jones) and others have already referenced. There is an unjustifiable disparity in attention and funds, which are not being provided for research into this type of cancer, whereas others attract it. I see a role for my hon. Friend’s Department. A number of right hon. and hon. colleagues have referenced the huge and valuable local fundraising that often goes on as a result of an individual tragedy. To avoid duplication and some of the problems that the hon. Lady referenced—the access to tissue and so on—could the Minister say in his summing up what role, if any, the Department might have in leading some form of co-ordination to try to get a national approach? However, that should not be seen as an abrogation, relying on the voluntary sector for the Department not to step up to the plate.

At the first or second surgery that I held after the election last year, a constituent called Sacha Langton-Gilks came to my surgery, and her story is replicated so many times. She had lost her son at the age of 16 to a brain tumour; he was diagnosed at the age of 11 in 2007. For five years he was treated very well with chemotherapy and radiotherapy, but underwent 11 brain operations. The cancer reappeared in May 2012 and such was the physical toll on him and the family, they decided to go for the quiet option and not to prolong his life through any unnecessary and probably futile suffering. We must do something about all those tragic stories.

If I may, I want to talk briefly about the work and the campaign of HeadSmart. I cannot understand, and neither can my constituent who works on its education side, the Department’s reticence to have HeadSmart’s booklet inserted into the little red health book of every child. We must improve education and knowledge about this. Every death that we hear about is met by frustration and a sense of futility, which could so easily be evaporated if we were able to have a better and more pronounced understanding of the subject.

We have to do more about screening. It is unjustifiable that a child in the UK with a brain tumour takes on average three times longer to be diagnosed than somebody in the United States of America and even somebody in Poland. We are the world’s fifth largest economy. We know that there is pressure on the public purse, but, given the vulnerability of so many of these young people, now is the time for action. Will the Minister work with HeadSmart and others to get the information booklet into the little red health book and also to promote the information talks that HeadSmart provides within schools? It is crucial in personal, social, health and economic education, which is not technically required in academies. That is something we will have to think about as another aspect of policy, but now is the time for the Government to step up to the plate.

--- Later in debate ---

[Caroline Nokes]

I pay tribute to my hon. Friend’s work as chair of the APPG, and I will highlight exactly that situation with the case of a constituent. Brain tumours are not as rare as we might think; they are the biggest cancer killer of children. That is why I argue that research and knowledge are critical.

I received an incredibly moving letter from my constituents, Charlotte Swithenbank and James Butler, the parents of Alfie, who is not yet two years old and has been fighting his cancer for more than a year. As in many cases, Alfie was not initially diagnosed. It was not until his seventh trip to the doctor in just two weeks that he was referred to Southampton general hospital. Within 36 hours of admission, he was diagnosed with a grade 3 infant ependymoma, and he has since had more than 24 hours of surgery. He has also had chemotherapy.

[Simon Hoare]

Does my hon. Friend agree that there may be a correlation between a perception that brain cancers and brain tumours are somehow lower down the pecking order and the fact that GPs are less inclined to refer? They do not necessarily see them as part of the great initiatives of the Department.

[Caroline Nokes]

To be brutally honest, I do not know, but I agree with the chair of the APPG that it is critical that the medical community be incredibly aware of such cancers and make referrals as quickly as possible.

Alfie has been for proton beam therapy in the USA and has lived in hospital for more than five and a half months of his short life. He is scheduled to have his MRI today, which is why his parents are not here; I am sure that they will catch up with the debate later. That MRI will, we hope, establish whether Alfie has gone into remission. We want that news to be positive, but as his mother, Charlotte, says, even if Alfie is now in remission, given the type of tumour he has, there is a 50% chance that it will return within seven years. As a family, they will live in fear even if he has gone into remission.

Charlotte also says that early diagnosis is key. It was her persistence in going back to the GP time and again, and refusing to accept that it was just an ear infection, that meant that Alfie’s diagnosis, in comparison with many, was relatively quick. That got him referred to an excellent children’s unit, which has helped him to have a fighting chance.

Charlotte has sought to convey to me how urgent this issue is. Unlike other cancers, the incidence of brain tumours is rising and the improvements in outcome that we have seen in other cancers have not been matched in brain cancers. In Southampton, we are incredibly lucky to have the Cancer Research UK unit located adjacent to the general hospital. MPs are invited there every year to hear about the work it does and to see graphs that show that, for the majority of cancers, treatment rates are more successful and incidence is going down. However, for brain tumours, those are going in the other direction; the cures have not been as forthcoming as for other cancers.

We are all here today to convey the message to the Minister that we want more investment in research in this field, so that more parents do not have to go through what Charlotte and James are going through, and more children like Alfie have the best possible chance of a positive outcome.