Paediatric Cancers of the Central Nervous System

Chris Elmore Excerpts

Monday 22nd October 2018 Commons Chamber

[Chris Elmore (Ogmore) (Lab)]

I am extremely grateful to have been granted this important Adjournment debate. In all honesty, I wish I was not having to take part in it, but on 29 January, Cian Case, a six-year-old little boy from Llanharan in my constituency, tragically died after suffering a relapse of an aggressive cancer of his central nervous system. Cian was a young, gentle and happy young boy whose life was lost too early—far too early. It was a privilege to meet Cian at a fundraising rugby match in March 2016. I will never forget his warmth and acute sense of humour about his condition, or indeed the look of joy on his face at the fact that the community had come out in their hundreds to support him.

Cancer is a foe that every single Member will have experience of. Whether it be a sibling, a parent, an aunt, an uncle, a friend or even somebody we have just got to know in passing, Members across this House, as well as the people we serve, will have had cancer touch their lives and will know of its life-shattering effects. There is no good time for anybody to get cancer, but as I am sure you would agree, Madam Deputy Speaker, it is particularly harrowing and particularly life-changing to live through your child’s suffering with, and eventually dying from, this terrible disease.

It may come as a surprise to many Members across the House that, on this occasion, I do not stand here to point the finger of blame at the Government or to take a swipe at the NHS in England, or indeed in Wales. Instead, I seek to tell Cian’s story in the hope that we can work together, on a cross-party and cross-Government basis, to help to ensure that no family has to go through what Cian Case’s family underwent.

[Nick Thomas-Symonds (Torfaen) (Lab)]

I congratulate my hon. Friend on securing this debate, and on speaking so movingly about his young constituent. Having experienced having a seriously ill child, I know that one vital thing in such a situation is the care that hospitals provide not just for the child, but for the parents and the carers who spend a great deal of time there. Does he agree that there should also be a focus on that as we move forward on this crucial issue?

[Chris Elmore]

I entirely agree with my hon. Friend. I pay tribute to him for the bravery that he and his wife, Rebecca, have shown over William. I am so pleased to see pictures of him now looking so well and on the road to recovery.

[Jim Shannon (Strangford) (DUP)]

I thank the hon. Gentleman for bringing forward such an important issue as an Adjournment debate. We have some three hours to complete the debate, so he has tons of time. About 400 children are diagnosed with a central nervous system tumour in the UK each year, accounting for a quarter of all childhood cancer cases. Like the hon. Gentleman, I salute the doctors, nurses and carers for all the work that they do in looking after these children. Survival rates for other cancers have significantly increased in the past 50 years, but the same cannot be said for brain tumours. Many charities and research groups are working in collaboration to find a cure. Does the hon. Gentleman agree that more needs to be done to raise awareness, find a cure and ensure that parents are fully aware of the key signs and symptoms in babies and young children?

[Chris Elmore]

I agree entirely with the hon. Gentleman. I hope my speech will go some way to highlighting that more work is needed, and to paying tribute to parents and families who have lost children through this horrendous condition.

Cian was first diagnosed with an atypical teratoid/rhabdoid tumour in 2015, when he was four years old. This type of tumour, often called an AT/RT, is a very rare and rapidly growing tumour of the central nervous system. Cian’s primary tumour was found on his spine, with seeds of the cancer also found in his brain. In the majority of cases, AT/RT is associated with a specific genetic mutation, INI1, which can occur spontaneously or be inherited. However, genetic testing in Cian’s instance did not indicate that he had this specific mutation. Cian’s tumour was located on his spine. AT/RTs are generally located anywhere in the brain, but are most commonly found in the cerebellum—the base of the brain—and in the brain stem, which is the part of the brain that controls basic body functions. The fact that Cian’s tumour bucked this trend made a difficult medical situation even more complex. AT/RT was previously thought to have been a type of medulloblastoma. However, it is now known that this is a totally different type of cancer and cannot therefore be treated via the same methods.

Mercifully, childhood cancer is rare in itself. The majority of children who are sadly subjected to this disease are diagnosed with a form of leukaemia. Brain tumours are much more rare, and AT/RTs make up only between 1% and 2% of these cases. I hope this illustrates just how tragic it was that Cian contracted not just cancer, but a cancer of the rarest of forms. This, however, is exactly why we have to do something. We have to do something to remember Cian and ensure that his legacy is that other families may be prevented from suffering a similar fate.

[Ian Murray (Edinburgh South) (Lab)]

I congratulate my hon. Friend on his wonderful speech and pay tribute to Cian’s family for all they have done on this issue. Will he join me in paying tribute also to Cancer Research UK, which in the past 12 months has tripled its funding for brain cancer research, understanding that it has been under-researched up to now? Should we not be encouraging the Government and working with them to do all they can to ensure that research into these key cancers continues?

[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.

[Mark Tami (Alyn and Deeside) (Lab)]

My hon. Friend will be aware of CLIC Sargent’s campaign. In an event today, the charity highlighted the cost of travel for families with children who are in treatment. The average is about £200 per month. We need to do a lot more to support families and to cover some of those costs.

[Chris Elmore]

I agree. Often with children’s cancer, one member of the family—usually the mother—has to give up their job to be a carer. That has a massive impact on the family. I completely agree with my hon. Friend that that has to be addressed.

[Martin Whitfield (East Lothian) (Lab)]

My hon. Friend is being generous with his time, debating an important subject that has been raised several times in this House. I rise to pay tribute to two constituents—Alex Logan and Luke Stewart—who lost their lives recently. I have spoken to the Minister and others about treatment abroad, and I urge the Minister and the NHS to look more widely for possible cures and to be—I phrase this carefully—more open-minded about where the answers may lie.

[Chris Elmore]

I agree with my hon. Friend and endorse his tribute to his two constituents. I will speak later about some of my asks regarding international research, to which I hope the Minister will respond positively.

It is of course vital that we continue to undertake the best research possible into brain tumours in adults, but I must impress upon the Minister that it is essential that we give equal priority to childhood cancers. It is extremely positive to see groundbreaking work being undertaken in Wales, including through the Wales Cancer Research Centre, which is funded by the Welsh Government and led by Cardiff University. In recent years, it has been very positive to see the new drug/radiation combination trials coming to Wales, which could lead to new world-leading treatments being made available in the Welsh NHS. Clinicians and politicians of all political colours agree that this is an uphill struggle, but I know that it is a fight that colleagues in the Welsh Government will face head-on.

I pay tribute to the charities doing such vital work to advance research. I am pleased that the charity Brain Tumour Research is working closely with Cardiff University to fund research into some of the most aggressive forms of brain tumours. I know that Brain Tumour Research and CLIC Sargent have raised concerns about the hidden costs of treatments for the families of patients being treated for such cancers. CLIC Sargent finds that parents of children suffering from cancer spend as much as £600 a month on top of their normal travel expenses. We must work together, across health boundaries, to decrease that cost and provide financial support where possible.

[Carolyn Harris (Swansea East) (Lab)]

Will my hon. Friend join me in paying tribute to Cian’s parents? As a parent in a similar position, I know how difficult it is for them to talk about their personal loss and to campaign for their son. They should be applauded for their courage in allowing us to discuss this important issue.

[Chris Elmore]

I thank my hon. Friend for her, as ever, courteous and heartfelt intervention. I know of the trauma she is facing in her family life. Richard and Lorraine are extraordinary people, as are their wider family. I have been impressed by their courage throughout Cian’s illness and, now, his passing.

We must not forget those who are lucky enough to survive such aggressive forms of cancer. Survivors often face a lifetime of other health complications, including mobility issues, cognitive challenges, infertility, growth complications and other conditions that require a high level of medical support. We must ensure that aftercare for those children is world class, and that they are able to lead as full, happy and long a life as possible.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I congratulate the hon. Gentleman on securing this Adjournment debate to raise awareness of an important health condition. He described how the tumour affecting his constituent was in the cerebellum and is now discussing the long-term effects for survivors of childhood brain tumours. Both treatment and recovery are determined to some degree by the location of the tumour, which can vary widely. I remember clearly a young patient who had a tumour so close to her brainstem—the part of the brain that controls breathing, which we do not think consciously about—that she had to live in intensive care for many months during her treatment, because at any point she could stop breathing. I remember sitting with her when she was making a cotton wool collage of a winter scene and she simply stopped breathing. When she was awake, one could say, “Breathe,” and she would make a conscious effort to breathe; if she was asleep or distracted, or no one was paying attention, she would have passed away. She needed that constant reminder. That is why it is important to ensure not only that we have research and medical treatment during illness, but that for recovery there is a multi-disciplinary team—physios, speech therapists, occupational therapists and so on—so that children who survive these awful tumours make the fullest possible recovery and can live the fullest possible lives afterward.

[Chris Elmore]

I agree with the hon. Lady entirely. There is clearly a need to look not just at treatment but at what comes next. If we are to improve survival rates, which we must—research is a key part of that—then we need to look at what comes next for these families and for the children who, touch wood, will survive.

[Mark Tami]

We must not forgot mental health either. It is very important that we provide support and counselling afterwards. After what these young people have gone through, it is important they receive mental health support.

[Chris Elmore]

I agree entirely with my hon. Friend. It is such an important part of the recovery that families go through. That a child has cancer is in itself a huge trauma. What comes next is so important, and mental health for both the child and the family cannot be forgotten. This again underlines the life-changing effects of cancers such as AT/RT on a child. It will in all likelihood impact on every aspect of their life.

There is a great deal of positive work happening in this House. I would like to pay tribute to my hon. Friend the Member for Bristol West (Thangam Debbonaire) and her colleagues on the all-party group on children, teenagers and young adults with cancer, who recently held an inquiry into patient experiences of childhood cancers, the findings of which were published this year. After discussing the inquiry with my hon. Friend, I would like to thank the Minister for the positive contribution he made to it. I ask him and the Secretary of State to look at the report’s recommendations. Many are comparatively inexpensive and would make a huge difference to the children and their families who find themselves in this situation. I appeal to the Minister to update the House on his response to the all-party group’s findings.

[Thangam Debbonaire (Bristol West) (Lab)]

I thank my hon. Friend for giving way and for the very kind tribute he paid to the all-party group for its inquiry. Many of the panel members are in the House today. I would just like to add my support to what he has just asked of the Minister. Does my hon. Friend agree that it would be good if the Government could commit to greater education and awareness? Although it is rare, the signs and symptoms of cancer in children need to be picked up early. The earlier they are picked up, the more likely it is that treatment is successful.

[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.

--- Later in debate ---

[Steve Brine]

There is a role for the state, but the hospice trust in my constituency told me many times that the last thing it wanted was to be 100% reliant on the state. It does not want to be an arm of the state; it enjoys its charitable status. I remember taking delegations from Naomi House, and from the sector, to meet David Cameron when he was Prime Minister, and I think that we could do a lot better in relation to the specialised commissioning of these services. It is still too confusing and too confused, and still too patchy from clinical commissioning group to clinical commissioning group. We are determined to do better in that regard.

Before I went off on a tangent, I was talking about awareness of childhood cancers, which a number of Members mentioned. We must improve awareness of cancer, full stop. I am very proud of Be Clear on Cancer’s “blood in pee” campaign, which is part of my brief. However, as someone who has young children, I know that the challenge is striking the balance between educating children about the warning signs of cancer and frightening them about a risk that is relatively low at their age. My motto would be that the best must not be the enemy of the good.

A number of Members will know about the work of the Teenage Cancer Trust and CoppaFeel! The hon. Member for Bristol West certainly does, because of the work that she has done in relation to breast cancer. Coppafeel!—I still think that that is the best name for a charity that I have heard since I have been doing this job—is run by Kris Hallenga, a brilliantly brave young lady who has terminal breast cancer. It ran a superb cancer awareness campaign in schools, about which I have talked to secondary schools in my constituency. It is sensitive and evidence-based, and pitched very appropriately.

I recently took both those charities to discuss their campaigns with the Minister for School Standards, my right hon. Friend the Member for Bognor Regis and Littlehampton (Nick Gibb). As the House will know from a statement made by the Secretary of State before the summer recess, the Department for Education will be consulting on its health education guidance until 7 November. I encourage charities, all-party parliamentary groups and parents to put forward their views on how we might go further to educate children about cancer. That is critical if we are serious about prevention, which we are.

Let me end by putting on record my tribute to the NHS doctors, nurses, support staff and charities, and our colleagues in the wider cancer community—Team Cancer, as I call it—who work so tirelessly every day to ensure that our constituents, and thousands of children like Cian, benefit from the support and the expertise that give them a chance of recovery and a full life. They are true heroes. They are the ones who will oversee the potential for huge progress in the next 10 years on the cancer diagnosis, treatment and support that we hope to see.

[Chris Elmore]

I am extremely grateful to the Minister for giving way again—we are in the unusual position of having lots of time, as he has pointed out. I am not sure whether this is in order, but I want to thank him most sincerely for the open way in which he has spoken and responded to Cian’s story, and for the commitments he has given this evening, which will be welcomed across the House and by Cian’s family, particularly the commitment to respond to the all-party parliamentary group and the international commitment on the G7 and the G20. I am enormously grateful, as I know every cancer sufferer and every family member of a cancer sufferer will be. I pay tribute to him, in a rare moment of affection and thanks in this House, which often resembles a bear pit more than anything else, because he clearly has an enormous commitment to the cause that is cancer.

[Steve Brine]

That is a very nice thing to say. I thank the hon. Gentleman.

In closing, we think that the NHS long-term plan, with cancer right at its heart and with the new north star ambition on early diagnosis and 75% early stage detection, will turbo-charge all that we have already achieved. We are on track to achieve that through the cancer strategy. Last Thursday, in the Westminster Hall debate on breast cancer, I said that I want to see a future where cancer has no future. Maybe I am naive and ambitious, but I want to reiterate that today, because I think that we could achieve that. If we are ever to achieve that goal, I sincerely hope that we can begin by first eradicating all childhood cancers, because many people are relying on us.