Diffuse Intrinsic Pontine Glioma

Jackie Doyle-Price Excerpts

Tuesday 14th November 2017 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (Jackie Doyle-Price)]

I pay tribute to the speeches of the hon. Members for Edinburgh South (Ian Murray) and for East Lothian (Martin Whitfield). The House needed to hear about the bravery of Luke and Alex, and no one could fail to be moved by their courage and the courage of their families or by the commitment of the community in raising the much needed funding for their treatment. I thank both hon. Gentlemen for bringing those stories to life, and my thoughts go out to the brave boys and their families and friends. I agree with everyone who has spoken that research is crucial in the fight against cancer, and childhood cancers in particular. Nobody wants to hear the news that those families heard about their children, but the fact that they are approaching things with so much hope is quite inspirational, and I have the utmost respect for them.

To bring the House up to date with what the Department of Health is doing, research is absolutely critical, which is why the Department invests a billion pounds a year in health research through the National Institute for Health Research. The Department also works closely with a wide range of partners for research funding. Spending on cancer research specifically has risen to £137 million in this financial year, which is the largest NIHR spend in any disease area. However, the challenges of increasing research into brain tumours persist, and I wholeheartedly agree that that research is essential in order to improve treatment for sufferers and their families. The hon. Member for Edinburgh South referred to the Westminster Hall debate on brain tumours in 2016, and the Department has established a task and finish group on brain tumour research to investigate what more can be done. I am pleased that that report will be published before the end of the year. It has been slightly delayed—not because we are obfuscating, but because its impact can be increased by taking a little more time. I hope that that will reassure hon. Members.

The hon. Member for Edinburgh South and the hon. Member for Ilford North (Wes Streeting) both referred to the treatment in Mexico experienced by their constituents, and I acknowledge that that has come at great expense to the families and could not have happened without the generosity of the many people who have been inspired by the stories. I can tell the House that leading experts from Great Ormond Street and Alder Hey Children’s Hospital, as well as their colleagues from Europe and the USA, have reached out to the team in Mexico to better understand the treatment that is being given to patients. Without further data and discussion, it is not possible to say whether the exact treatment being offered in Mexico could be considered in the UK as part of a clinical trial, but I can assure the House that there is certainly an openness among UK experts to understand more about the treatment, which I hope will be welcomed.

[Wes Streeting]

I am grateful to the Minister for giving way on that point. One of the important functions that Great Ormond Street provided for Kaleigh Lau’s family was support when she was back in the UK. Immense pressures on Great Ormond Street at one point meant that a lack of access to beds and support led to a delay in her being admitted to the hospital. Will the Minister ask her officials to look at that particular issue? The nature of the condition and the time pressures—there is often a lack of time—make some of those delays even more stressful to the family. The Minister ought to probe and examine that issue.

[Jackie Doyle-Price]

I acknowledge the hon. Gentleman’s point, but the stress would be removed if we could actually investigate whether the treatment could be offered here, rather than have people travelling to Mexico. My priority will be to encourage discussions to enable that to happen.

Turning to some of the research that is happening at Great Ormond Street, which is the centre of excellence where we want childhood cancers to be tackled, research is being undertaken to develop T-cell immunotherapy delivery to tumours and selective therapies based on the molecular profiles of tumours. The research centre at University College London is also researching tumour markers and drug uptake. I am pleased to say that the NIHR clinical research network is supporting the NHS to deliver three clinical trials of new treatments for children with diffuse intrinsic pontine glioma. In the summer, Cancer Research UK announced its intention to fund up to two brain tumour centres of excellence to support multidisciplinary research, and the NIHR stands ready to provide full support to those new centres, together with other centres already funded by other charities, in delivering their research in the NHS. The working group is chaired by Professor Chris Whitty, the Department’s chief scientific adviser. The report is being finalised, and it should be ready before Christmas.

We know that early diagnosis is essential for all cancers if we are to provide the best treatment and support from the very start. I therefore welcome initiatives such as HeadSmart, which is working to increase awareness of the common signs and symptoms of brain tumours in babies, children and teenagers. The Department encourages the use of that initiative by professionals to signpost specialist advice, if needed, and the Department has promoted the awareness campaign with colleagues in NHS England, health visitors and school nurses.

The Government are also funding a radical upgrade of equipment to treat cancer, including £130 million to modernise radiotherapy across England. In April 2012 the Government announced a £250 million investment to build proton beam therapy facilities at the Christie Hospital in Manchester and at University College London Hospitals. The more precise targeting of radiotherapy afforded by this treatment means that higher doses can be delivered with fewer side effects and fewer long-term consequences, which is particularly important for paediatric patients.

We support the Less Survivable Cancers Taskforce, which also launched earlier this year. The taskforce aims to raise awareness of five cancers, including brain cancer, where survival rates have remained stubbornly poor for decades. The taskforce is also working to increase the number of clinical trials and treatments approved for those cancers as well as the level of research invested in them.

Despite the difficulties involved in researching new treatments for diffuse intrinsic pontine glioma, important studies are under way.

[Ian Murray]

I am grateful to the Minister for giving us a fairly comprehensive answer, and indeed some hope that progress is being made on this issue. Will she pick up on the issue raised by Luke’s parents? They would like to meet her to discuss not just their experience but how Luke could perhaps help with some of that research. It would be great for her to hear directly from the parents so that she can get a full picture. It is not just about research and development; it is about their whole experience of being parents of a child with the disease.

[Jackie Doyle-Price]

I would be more than happy to meet Luke and his parents. As well as researching the symptoms and the possible treatments for this disease, we need to understand the experience that families go through, because support for families has to be part and parcel of the treatment. I would be delighted to hear from Luke’s parents to learn from their experiences.

We often look at these things in a very clinical way—it is clinical practice—but we are talking about human beings and we are talking about lives. There is no substitute for bringing home exactly what we are talking about when young children are suffering with such a pernicious disease.

We will build on the studies I have outlined, and we will ensure that the funding provided for research results in better outcomes for those who are suffering, particularly where they are children, but we should remember there is hope. We heard Luke’s story, and we heard that he is at school. He has lived longer than his initial prognosis, so we wish him well. We have much hope.

Here on the Front Bench next to the Under-Secretary of State for Work and Pensions, my hon. Friend the Member for Hexham (Guy Opperman), and looking at the hon. Member for Sheffield Central (Paul Blomfield), I am struck by the fact that both have lived through brain tumours and come out the other side. They are an inspiration, and they show that, with the right treatment, people can live despite having a potentially killer disease.

It is my job as a Minister, and it is the job of the Department of Health, to ensure that we leave no stone unturned in making sure that we get the best possible treatment for anyone who suffers from these conditions.

[Mr Deputy Speaker (Mr Lindsay Hoyle)]

Here’s to Luke.

Question put and agreed to.