Brain Tumours

Debate between Derek Twigg and Helen Jones

Monday 18th April 2016 Westminster Hall

[Helen Jones (Warrington North) (Lab)]

I beg to move,

That this House has considered e-petition 105560 relating to funding for research into brain tumours.

It is a great pleasure to be here under your chairmanship, Sir Edward, and to see so many colleagues present for this debate on funding for research into brain tumours, which was the subject of the first report by the new Petitions Committee.

We began this inquiry in response to a petition that was started by Maria Lester, whose brother, Stephen Realf, died following a brain tumour. It is fair to say—I think my colleagues would agree—that we began in a state of ignorance. We did not know a great deal about brain tumours or their impact, but, as we proceeded with the inquiry, we were humbled and shocked. We were humbled by the people who came forward to give evidence to us, whether in person, in writing or on the web; it is a measure of the interest in this topic that we received more than 1,100 posts on our web thread in 10 days. All those people had been either directly or indirectly affected by brain tumour and wanted to use their experience to improve other people’s chances. We were also shocked at the number of life years lost to this dreadful disease, the impact on children and the pitifully small amount of research funding devoted to it.

For that reason, we have made our report slightly different from some Select Committee reports; there are many individual stories in it and pictures of those affected. That is because we want to make it clear that this is not just a matter of statistics. Real lives, real people and real families are affected, and they are let down at almost every stage of the process, because, despite the excellent work of the doctors in this area, the system is underfunded and not properly structured, and has been so for years. That is our collective failure, because the neglect has gone on under different Governments, even though brain tumours are the biggest cause of cancers in children and in the under-40s. They account for between 15% and 25% of cancers in the under-25s and, if we look at the statistics overall for all age groups, we see that about 60% of cancers involve the brain at some stage, meaning that there has to be treatment for that if people are to recover. Because of the age groups that are generally affected, the number of life years lost to this cancer is greater than for any other cancer, and, of course, when children are involved, the situation is particularly tragic.

A number of parents came forward to tell us what had happened to their children. A number of those children suffered from a type of tumour called diffuse intrinsic pontine glioma, or DIPG, which is almost universally fatal. In this country, a child is diagnosed with one every nine days, yet few people have even heard of it. I suggest that, if they had, there would be much more pressure to increase funding for research in that area.

Those who survive, whether children or adults, face a huge burden from this disease. Many survive with serious disabilities, including physical disabilities or other things such as memory loss, personality change or cognitive disorders. Because of the huge burden of the disease, in terms of life years lost and significant disabilities among those who survive, we have made the recommendations that we have and we believe that it is time for a step change in how we deal with this most awful cancer.

That change has to begin, of course, with diagnosis, with which there are major difficulties. GPs may see only two or three cases in their professional lives, and in its early days brain tumour can mimic the symptoms of other diseases. However, 61% of people are diagnosed in A&E when they reach a crisis. We heard time and again from people who went back to their GP and went back to other doctors, often knowing that something was seriously wrong with them or with their child, but they were still not able to get a diagnosis. I suggest that we would not accept 60% being diagnosed in A&E for any other cancer and we should not be accepting it for this one.

Early diagnosis matters, because it affects the treatment options and the outcome. If we were able to diagnose people earlier, more would survive, especially among children, and there would be better outcomes for patients, with fewer survivors left with significant disabilities. That is why, I say to the Minister, we were concerned to note that the Government’s Be Clear on Cancer campaign did not include brain tumour. We understand that that is because the number of life years lost is not taken into account in deciding which cancers are included, and we believe that has to change.

There are important things happening. For example, the HeadSmart campaign, which seeks to raise awareness among GPs and lists the symptoms that can be seen in different age groups, has managed to improve the time taken between people presenting to their GP and diagnosis. Again, however, we are concerned that the guidelines issued by the National Institute for Health and Care Excellence in 2015 do not include lists of different symptoms for different age groups. We think that needs resolving.

[Derek Twigg (Halton) (Lab)]

Why does my hon. Friend think that NICE guidelines did not take that into account and include the information that we feel should be included?