Child Cancer

Seema Kennedy Excerpts

Monday 28th November 2016 Westminster Hall

[Ben Howlett]

I agree with the hon. Gentleman. There is a multitude of different organisations out there to help at the point when a diagnosis is received, but of course that should not distract from the fact that the Government also need to look at early intervention to support the family of a child when the child receives a diagnosis. I hope that the Minister will mention that when responding to the debate.

I am the MP for Bath, which is in the south-west, and I pay personal tribute to the great work done by the Children’s Hospice South West, which serves my constituency and others across the entire region. The hospice’s dedication and the service it provides in the final days of a child’s life is tremendous. I thank the hospice on behalf of my constituents for all the work that it does.

Research and funding are obviously critical. Evidence has been submitted throughout the course of the discussions around this issue. I am sure that all colleagues in this House will welcome the fact that the number of children dying from cancer each year in the UK has fallen in the last 20 years, but one child dying is obviously far too many. Research has been at the heart of the progress made, helping more children to survive cancer than ever before, but as I said, childhood cancer remains the biggest killer by disease of children in the western world.

[Seema Kennedy (South Ribble) (Con)]

My hon. Friend rightly mentions research and progress. I intervene briefly to speak about my constituent, Paula Adair, whose daughter, Katy Holmes, died in 2012 of a diffuse pontine glioma. Paula made the point to me that Katy received the same treatment that Neil Armstrong’s daughter had received nearly 40 years before, showing that there had not been adequate progress on these terrible diseases.

[Ben Howlett]

I thank my hon. Friend for her intervention, and I pay tribute to her and to other colleagues for championing cases such as that one in their work as constituency MPs. She makes an incredibly important point. Months ago, I took part in another Petitions Committee debate in relation to brain tumours and it is quite clear to me that the rarer a cancer is, the less attention is paid to the funding of research to find the underlying causes. There has been a change during the last few months and years, with more attention focused on some of the rarer cancers, but there is still a long way to go. I hope that some of the major progress made on the more common cancers, such as prostate cancer and breast cancer, and the evidence gathered can be applied to some of the rarer cancers as medical technology improves.

Approximately 3,800 children and young people in the UK are diagnosed with cancer each year, and approximately 260 children in the UK die each year from cancer before their 15th birthday. For those who survive, there are often lifelong treatment-related health problems to be dealt with. In addition, as the hon. Member for Alyn and Deeside (Mark Tami) made clear, there are also the ongoing costs in relation to the treatment and support for the families as well throughout the entire process. To be frank, we must do an awful lot more.

--- Later in debate ---

[Wes Streeting (Ilford North) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Davies. I thank the hon. Member for Bath (Ben Howlett) for opening the debate so well, and I thank other hon. and right hon. Members who have spoken. We are here this afternoon because of Andrew Barnard, who lost his daughter Poppy-Mai to a brain tumour. We owe a particular debt of gratitude to him for the effort that he put into campaigning on behalf of so many other children whose lives will sadly be blighted, and even tragically ended, as a result of childhood cancer. The theme of families and the courage and bravery that they show in campaigning, not only for their own children but on behalf of so many others, is a theme I will return to.

I want to raise three issues during this afternoon’s debate: first, the extraordinary courage and resilience of families and the need to support them; secondly, the importance of awareness and early diagnosis and intervention; and thirdly and most importantly, the need for research so that we can reduce and even eradicate the number of children dying needlessly from cancers that will be found to be curable.

I am here this afternoon because of my six-year-old constituent, Kaleigh Lau, and her remarkable family, Scott, Yang and Carson. Like most girls her age, Kaleigh is active and fun. She enjoys dancing, singing, swimming and playing with her friends. In April, things changed for her. She complained of double vision, and her family noticed that there was a problem with her eyes. Fortunately, they took immediate action and took her to Moorfields eye hospital. After some initial checks, there was found to be no problem with her vision, so on the same day she was referred to the Royal London hospital for a CT scan and an MRI scan.

When a lump on Kaleigh’s brain was identified, she was immediately referred to Great Ormond Street hospital, where two days later she was diagnosed with a rare form of childhood brain tumour called a diffuse intrinsic pontine glioma. It is a brain stem tumour that mostly, although not exclusively, affects children. It is estimated that fewer than 40 children a year develop them in the UK and that they account for just 10% to 15% of all brain tumours. They are high-grade brain tumours that are fast-growing and can spread throughout the brain stem. As a result, they are difficult to treat and have a poor prognosis. The main treatment offered is radiotherapy. The tumours are not suitable for surgery because of their location in the brain stem, and chemotherapy has been shown to have little effect, but research in that area is ongoing.

[Seema Kennedy]

The hon. Gentleman’s constituent has exactly the same brain tumour as my constituent, Katy. Although only 40 children a year develop such tumours, they are primary school children with a whole lifetime ahead of them. Research in that area would pay dividends, because although 40 is a small number, those children could go on to be productive members of our society. The important point is that they have a lifetime ahead of them.

[Wes Streeting]

I wholeheartedly agree, and I will come on to talk about the personal impact that such a diagnosis can have on families.

As the hon. Lady knows, the prognosis is poor. Only 30% of children with DIPG are likely to survive for more than a year after diagnosis, and 90% do not survive for two years. According to the Minister’s response on 13 September to a written question that I submitted, there has been only one UK trial relating to DIPG. Although there are some great initiatives—particularly the INSTINCT project, which brings together experts from Newcastle University, the Institute of Cancer Research, and the University College London Great Ormond Street Institute for Child Health in London—we have yet to find a cure.

Dr Darren Hargrave at Great Ormond Street is leading a new clinical trial to test three new drugs in 150 children affected by DIPG. Professor Chris Jones and his team at the Institute of Cancer Research have found links between the genetic faults in the DNA of children with DIPG and people with stone man syndrome. Lots of work is being done on the links between DIPG and other diseases, but it has yet to lead to a cure. There is some hope that the work being undertaken by Professor Steven Gill, who is leading a team based at the Harley Street Clinic to develop a treatment known as convection-enhanced delivery, may produce a treatment that leads to an extension of life, as some of the initial experiments have shown. It is hoped that CED might lead to a cure, but the overall outlook for those children is not positive.

As the hon. Lady said, the number of children affected in the UK is relatively small, but the impact on them and their families is simply unimaginable. Without being from a family that has been directly affected by a childhood brain tumour or another form of childhood cancer, it is impossible to know what those families go through. I have been given some insight through the work I have done with my constituent’s family—particularly her father, Scott.

We need early diagnosis. The swift response of Kaleigh’s family and the hospitals that she visited enabled an early diagnosis. I pay tribute to the clinicians and staff of Moorfields eye hospital, the Royal London hospital and Great Ormond Street hospital, and, in particular, to Kaleigh’s family. When families are affected in that way, it has an impact on the whole of family life. So many anxieties, issues and day-to-day challenges are thrown up. Is the cough or cold that the child is experiencing simply a winter condition, or is it something more serious? Most parents would not be worried when their child comes home after a fall or a scrape at school—they dust them off and it is fine—but so many of these parents have to worry about what caused the fall. Was it an innocent childhood accident or something more worrying?

There are some fantastic charities that provide support to the families that are affected. In my constituency, Hopes & Dreams provides dreams to children with life-limiting or terminal illnesses. It enabled Kaleigh and her family and friends to go to Center Parcs, which gave the family welcome respite and gave Kaleigh the opportunity to enjoy herself with her family and friends in the way she normally does.

I have also had to see Kaleigh’s family battle for information—in particular, about accessing some of the experimental treatments that are available. They have had to battle on numerous fronts. They have battled against bureaucracy and tried to navigate their way through the system, and getting partners and agencies to work together to ensure their child is at the centre of health managers’ and clinicians’ thinking has been a particular challenge.

There is also the issue of money. Kaleigh’s family raised considerable amounts of money through both the generous support of family friends and members of the public, and their own finances. I am struck by the concern that her father raised about the families who are not in the same position, do not have access to a network of support and have not been able to find funding. It is simply not right that some families lose out because they do not have the money or are not able to raise the funds needed to access treatments that could lead to an extension of life or a cure. I hope the Minister will address the issue of what we can do to ensure that access to treatment—experimental treatment and clinical trials—is not limited by families’ wealth.

I also want to raise the issue of funding for research. I pay particular tribute to Kaleigh and her family. I am in awe of the fact that, amid all the day-to-day challenges that her condition presents and the battle to ensure that she gets access to treatment that could alleviate her symptoms and extend her life, Kaleigh’s family and Kaleigh herself have engaged so energetically in a campaign for more funding for research into DIPG and other forms of childhood brain tumours. In the past few months, they have engaged a range of celebrities. JK Rowling supported their petition, and for the past two weekends Kaleigh has been touring “The X Factor” studio, signing up a range of the finalists to tweet the petition. She has got members of the cast of “The Only Way is Essex” on board—they are an Essex family, and I am an Essex MP. The cast are supporting our local family, which is fantastic.

I have been overwhelmed by the number of right hon. and hon. Members who have wanted to support Kaleigh’s campaign by having a picture taken with the Kaleigh bear, which has been on tour around Parliament, and by tweeting links to the petition for more Government funding. We have also had great support from our local newspapers—the Ilford Recorder, the Wanstead and Woodford Recorder, the Wanstead and Woodford Guardian and the London Evening Standard. I thank them for their support in raising awareness of Kaleigh’s campaign in search of more funding for a cure.

It is very welcome that the Government have a working group, which we hope will report in 2017, to look at how to increase the impact and quantity of brain tumour research, but however much effort they are putting in, the sad truth is that in the 12 months or so before the report is published and the Government take action, so many children across our country will be diagnosed with DIPG and other brain tumours. The urgency of this task cannot be overstated. A significant amount of money already goes in through the National Institute for Health Research and the Medical Research Council, but much more clearly needs to be done. There are competing demands and pressures on Government budgets, but for so many families in our country today and in the coming days, weeks, months and years, that funding could save a child’s life. I hope that the Minister will make a commitment to see what more she can do within the constraints of the health budget to invest in a crucial area that matters so much to so many families throughout the country.

I urge all right hon. and hon. Members present in the Chamber and throughout the House, as well as members of the public who might be watching this debate, to support Kaleigh’s Trust, to tweet links to the petition and to share it with family and friends, and to continue applying pressure to get more people to understand the impacts of terrible conditions such as DIPG and the urgency to fund and find a cure.

In closing, I again pay tribute to the extraordinary courage and resilience of Kaleigh and her family, and to so many other such families, who in spite of troubling and traumatic times continue to battle on, not only for their children but for others. That should inspire us all to do more individually and collectively.