Paediatric Cancers of the Central Nervous System

Wes Streeting Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore]

I agree entirely. I am sure the Minister will set out the extra work the Government here and the Administrations in Scotland, Cardiff and Belfast are doing.

The very fact that these cancers are rare often makes it difficult to get a research cohort together, but we cannot allow that to be a barrier to finding new treatments and even cures for such illnesses. The treatments currently available for childhood cancers in the brain or spine tumours range from neurosurgery to radiotherapy, chemotherapy and steroids, and finally proton beam therapy. The course of treatment is tailored to the individual case, with patients typically undergoing multiple treatments. Sadly, AT/RT patients do not typically have good survival rates, and outcomes are poorer if a child has signs of tumour spread at diagnosis. We cannot accurately predict the outcome for any individual child who has developed such a tumour, but children diagnosed who are less than 12 months old are less likely to be able to fight the disease.

It will come as no surprise to hon. Members when I say that the key to fighting this disease in the long term lies in medical research. There are many competing priorities in medical research, with many historic frontiers yet to be conquered, but we must ensure that all forms of illness that cause pain and suffering receive the attention and the willingness to tackle them they deserve. I welcome the announcement from the Department of Health and Social Care earlier this year that the UK will invest £20 million in brain tumour research over the next five years. In addition, Cancer Research UK is investing £25 million to support that work. Will the Minister say what percentage of that funding will be used specifically for research into paediatric cancers?

[Wes Streeting (Ilford North) (Lab)]

I am grateful to my hon. Friend for securing this debate. This year, I have attended the funerals of two very special and inspirational people. One was well known to us in this place: Dame Tessa Jowell, who led a valiant campaign against brain cancer. I welcome the Government’s response to her efforts. The other was my eight-year-old constituent Kaleigh Lau, who waged an equally valiant fight against diffuse intrinsic pontine glioma—a particularly rare form of brain tumour. May I endorse what my hon. Friend says about the importance of specific funding for childhood brain tumours, including rare conditions such as DIPG? May I also through him urge the Minister to look again at support, especially financial support, for families who travel long distances—in Kaleigh’s case, to Mexico—to access experimental, often successful and life-extending, treatment? That needs to be looked at, so that in future the life expectancy of a child depends not on how much money their parents have or can raise, but on whether our Government are prepared to ensure that all children have access to potentially life-extending treatment.

[Chris Elmore]

I agree, and I will touch on the impact on families later in my speech. People talk of the late Baroness Jowell—Tessa—and her legacy. There can be no greater legacy than securing the additional research funding through her campaign on tackling the causes of brain tumours. Of her many great achievements, that has to be the one that will live with all of us the longest.

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[Chris Elmore]

I entirely agree with my hon. Friend. I again pay tribute to her and her leadership not just on childhood cancer but on cancer generally. She is a true heroine of the cause and we are extremely grateful to have her in this House. It is clear that there is positive work being undertaken on this issue, but it has to be said that we can do more, much more, to help to tackle this disease.

Members across the House will remember when our dearly missed friend, the late Baroness Jowell, spoke so movingly, just days before Cian passed away last January, about the need to work much harder to make brain tumour research more effective. Tessa stressed the need to support the Eliminate Cancer Initiative to improve the chances of tackling this rare illness internationally. The creation of a clinical trial network around the world, an increase in the use of active trials, and the use of a global database would help to improve research and patient care. As Tessa so rightly said, through sharing knowledge across borders, and thereby at a local level across medical governance structures, we will be best placed to advance our knowledge of the most difficult and rare forms of cancers, including cancers of the central nervous system.

Making that happen will involve further investment in research into specific tumours such as AT/RT, and international collaboration to ensure that we have the best minds and the most innovative technology working on the most difficult of challenges. I believe the UK Government can be doing more to facilitate that. When Ministers visit other countries abroad, more often than not the two principal reasons for the trip are to further international trade or promote international security, both of which are of course vital. However, it is my view that in discussions with our foreign counterparts the issue of international research must rise up the agenda if we are to have any hope of accelerating our efforts in this area.

[Wes Streeting]

My hon. Friend is being very generous with his time. I am reluctant to introduce Brexit to this debate as we spend so much time discussing it, but on that specific point we have to ensure that we maintain research co-operation with other EU member states, not least so that we get the scale of rare cancers. In the week in which my local NHS trust announced it is closing the chemotherapy unit at King George hospital because of a shortage of chemotherapy nurses, may I gently ask the Minister to ensure that we recruit and retain, from both here and across EU member states, the staff we need to provide the high quality of care and treatment our constituents so desperately rely on?

[Chris Elmore]

I entirely agree with my hon. Friend. I will move on to the big B and the big C shortly.

Many of the children Cian was in hospital with had previously been sent abroad to participate in medical trials, including proton therapy. Will the Minister please look at what more we can do to collaborate with international drug trials and trials of new therapies to ensure that we have the most up-to-date treatments available here in the UK? Just as cancer affects so many people, so our efforts to counter it must include as many people as possible. This is simply not something that we can tackle alone.

Sadly, while the majority of my remarks have been about the big C, I must, as ever, touch on the big B. As we leave the European Union, it cannot be stressed enough how important it is for us to continue to work with our European partners to fund research, and indeed to undertake research ourselves into rare cancers. It is vital that we continue to play our part in EU research and development projects of genuine international importance. We must also continue to work with the European Association for Cancer Research, because we simply cannot sacrifice the potential new cancer treatments we will uncover in the name of, in my view, a misguided sense of regaining sovereignty. Indeed, the current treatment is agreed at EU level. Having first been established in 2002, the treatment was last fully reviewed in 2009. The drugs being used to treat this type of cancer are old in relative terms, showing what a vital role international governance can and will play in helping to improve outcomes in the future. Overall, the message I want to get across today is clear. So many cancers rightly receive a great deal of attention and research funding. I would argue that, just because rarer cancers, such as the one Cian suffered from, affect fewer people, that does not mean that we should not be as targeted or as innovative in our efforts to fight them.

If you will allow me, Madam Deputy Speaker, I would like to mention briefly the brilliant and selfless work Cian’s family have been doing to raise awareness of this particular type of cancer, and their work in fighting for new research and treatments for such paediatric cancers. Cian’s father, Richard, is in the Gallery today. I pay tribute to him and Cian’s mum, Lorraine, and his siblings Dillan aged 11 and Bethan aged 9, for their bravery. [Hon. Members: “Hear, hear.”] From when Cian was first diagnosed in November 2015, to when he was told in June 2016 that the tumours had gone, through to when he sadly relapsed in November 2017, his family have tirelessly raised awareness. His community have fundraised and, since his passing, they have continued their efforts.

I pay tribute to Cian’s family for all their efforts in the most difficult of circumstances. I would like to thank the whole community of Llanharan, the surrounding villages and far beyond, whose support for Cian has been unwavering. The online funding page set up following Cian’s death raised in excess of £6,000, which is going to help the charities who supported Cian and his family throughout his treatment. I am sure you will agree, Madam Deputy Speaker, that this shows what a mark this little boy has made on his local community. Likewise, I am so proud of all the staff, pupils and parents at Llanharan primary school, the school Cian attended, who were so supportive to Cian throughout his journey and who have been there for his parents and friends since. I was privileged to attend the memorial event they held shortly after Cian died. I am always proud to serve my constituents from the many communities across Ogmore, but I have to say that being part of this outpouring of love in the most tragic of circumstances was truly a privilege. I would like to put on record my thanks to Cian’s headteacher, Mrs Price, his class teacher, Mr Arthur, and all his school friends and the wider school community for the support and generosity they have shown Cian and his family. They planted bulbs which will bloom every year in his memory, so that Cian can never be forgotten.

I admit that there is no easy answer to the issues I have raised today. It will not be solved overnight simply by throwing money at it. The sad reality is that while we seek to meet some of the challenges, other families like Cian’s will sadly suffer the same anguish in the future. It is therefore essential that we raise awareness of the symptoms to look out for to ensure that this disease can be caught early, giving those unlucky few the best chance of survival. The National Cancer Institute finds that children who have developed AT/RT may experience the following: headaches, particularly in the morning; nausea or vomiting; fatigue or lethargy; difficulty with balance and co-ordination; and an increase in the size of their head. Because AT/RT develops so quickly, these symptoms can onset incredibly quickly over a matter of days or weeks. The symptoms can also vary depending on their age and the precise location of the tumour.

It is only right that I highlight the fact that many of these symptoms represent common medical conditions in both children and adults and, in the majority of instances, will not mean that a child has developed a brain tumour. If a parent ever has any doubt in their mind, however, I would always encourage them to seek medical advice. In Cian’s instance, he began experiencing stomach pains that were originally thought to have been abdominal migraines. In reality, it was the pressure of the tumour restricting the spinal cord that transmitted the nerve pain on to his torso.

Cian touched the hearts of all those around him. He was a warm, fun-loving and generous boy. While tragedies like this thankfully do not happen every day, when they do happen, it is only right that we reflect, pay tribute and act to help to ensure that we prevent such instances happening again. Cian was delighted to have met the Speaker during his visit to Parliament and No. 10 Downing Street back in 2016. While I would have liked him to have had the opportunity to return to this House, sadly this will now not be possible. Instead, we must ensure that the House comes together to support those affected by cancer and send a message that our determination to beat it—across all parties—is utterly unwavering.

I thank Members from across the House who have remained in the Chamber to hear Cian’s story and I thank the Minister for taking the time to consider what more we can do about this important issue. The key point I have stressed today is not party political; it is that we must continue to advance our knowledge base across the UK and, most importantly, internationally. By steadfastly supporting the Eliminate Cancer Initiative and redoubling our efforts to find new treatments, and, hopefully one day, a cure for cancers of the central nervous system, we can ensure that Cian’s legacy lives on.

Cian was a young boy with his whole life ahead of him. I appeal to the Minister and every Member: let us help to ensure that more children survive such cancers in his memory.

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[Steve Brine]

I will now take an intervention from the hon. Member for Ilford North (Wes Streeting).

[Wes Streeting]

I am grateful to the Minister for his thoughtful response to the debate. Will he and the Department look carefully at the issue of access to experimental treatment and financial support, and also the issue of control? One of the conversations that I had with Tessa was about how she had to wrest back control over her own choice in relation to risk and access to experimental treatment.

It would be hard enough for adults to make such choices for themselves, but parents are having to make those difficult choices, too. Some parents feel that they are making the best decisions for their children in turning down the opportunity of access to experimental treatment on the basis of an assessment of the risk and the impact on the life that they have left, while others choose to access such treatment in the interests of their children. While there are challenges in respect of the governance and, perhaps, some of the ethics of those arrangements, we must put a bit more trust and faith in parents. When they choose to access experimental treatment, even if the Department will not fund access to the treatment itself, it might be able, reasonably and ethically, to provide more support than it currently provides in respect of the associated costs of, for instance, travel, accommodation and subsistence.

[Steve Brine]

I will look into that. The late Baroness and I talked about exactly that subject. I do not think it is so much about ethics; I think that this must be clinically led. There is a great deal of debate in the clinical cancer community about the toxicity of concurrent treatments. However, I take the hon. Gentleman’s point about the costs, and the importance of supporting parents who must make decisions which are hard enough when people are making them for themselves.

My hon. Friend the Member for Sleaford and North Hykeham (Dr Johnson) mentioned an all-party parliamentary group of which I was a member before I was a Minister. I take all-party parliamentary groups so seriously because I used to lead loads of them. I spent hours writing reports, and, dare I say, I wish that they were sometimes taken as seriously as I take such reports.

It is in all-party parliamentary groups that a lot of good work goes on in the House. Opposition Members, who are not in government at this time, have a huge role to play in moving the dial. The smart Ministers are the ones who say that they do not know everything. The lines that the civil service gives them are often great, but they are not the be-all and end-all. I see APPGs as a brilliant and rich vein of knowledge for me, and I learn a lot from them. So yes, I will look out for my hon. Friend’s work in Together for Short Lives.

My constituency contains one of the best children’s hospice trusts, Naomi House and Jacksplace. My heart goes out to the child hospice movement and my respect for it is ample, and what Together for Short Lives does to represent that movement is incredible.