Child Cancer

Wes Streeting Excerpts

Monday 28th November 2016 Westminster Hall

[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.

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[Thangam Debbonaire]

I, too, will be mentioning similar services later in my speech. Absolutely, the last thing parents facing such awful situations need to be worrying about is where they will stay, how they will afford it and how they will afford even to put petrol in the tank.

My nephew was diagnosed at age 12 with osteosarcoma, a very rare childhood cancer. We were all so focused on getting him and his mum, and his sisters and brothers, though that illness that the longer-term impacts felt very much secondary. Specialist units such as the one in Bristol help the family as well as the young person with cancer to see the whole of life as important, to think about the longer-term implications and to prepare for them. I pay very personal tribute to the teenage and young adults cancer unit in Bristol for its work and to the Teenage Cancer Trust for its support of the unit.

As my hon. Friend said, getting the number of units right is difficult. Given the thankfully low numbers of childhood cancer victims, if the units are to be truly specialist, it will not be an easy matrix. To ensure an appropriate number of specialist units, the Government need to be clear with appropriate commissioning guidance and take responsibility for following it through.

In October when I asked the Department of Health in question 50795 what proportion of specialist units were funded by charitable trusts, the Under-Secretary of State for Health, the hon. Member for Warrington South (David Mowat), replied:

“This information is not held centrally.”

For me, that is simply not good enough. Yes, commissioning is done locally, and increasingly commissioning groups and trusts are collaborating, but Government leadership is necessary to work out how many units are needed and how to fund them. Will the Minister commit to gathering that information centrally in order to estimate properly the funding needed to commission appropriately throughout the country? Will she further commit to consulting on and publishing clear commissioning guidance so that the responsibility for commissioning and funding specialist treatment centres for children, young people and young adults is clearly identified, and so that a structure for commissioning across health regions is clear?

On the future of research into childhood cancers, there is clear potential for harm when the UK leaves the EU—I say “potential”, because any such harm can be mitigated, but the Government need to act urgently to address it. Earlier this month in answer to my question 50081 about research, the Minister for Universities, Science, Research and Innovation gave welcome assurances about funding. I welcome those assurances, but he did not mention research cohorts. Thankfully, childhood cancer is rare, so it is vital for UK researchers to be able to collaborate fully with their EU counterparts so that they can carry out clinically adequate research with a sufficiently large enough group of children and young people to provide clinically useful and secure results. Yes, funding is vital and I am grateful to him for those assurances, but it is not enough. My next question to the Minister present is this: will she commit to discussing that with her colleagues in the Department for Exiting the European Union, along with research about other rare childhood cancers?

As my hon. Friend the Member for Alyn and Deeside (Mark Tami) mentioned, children and young people with cancer and their parents often need to travel long distances for specialist treatment. That might always be unavoidable and, in any case, there are other huge financial costs for parents. In September, I was proud to chair the parliamentary launch of a report by CLIC Sargent, which does so much wonderful work to support children and families affected by childhood cancer. The report shows that the costs of cancer are not only emotional, educational and physical, but financial.

One young person at the launch spoke about how he had to prove repeatedly to the benefits agency that he had cancer and that his treatment was still not over nor his recovery complete. Another young person found that her student loan was stopped because she was deemed to be a student no longer, but her halls of residence still charged her rent. A lone parent spoke of her struggles to manage her finances while faced with losing her income from employment and the increased costs of driving her son a long distance many times each month for treatment, as well as the added costs of heating a home all day for a very sick child, which is often overlooked, and the costs of keeping clothes, bedding and house scrupulously clean, which is so important because the risk of infection is extremely high for those undergoing gruesome treatments such as chemotherapy, as other hon. Members have mentioned.

CLIC Sargent and other charities I know help with all those things and more. I have had the privilege of being shown round the CLIC Sargent house in Bristol, located a few minutes’ walk from the Bristol Royal infirmary. That house, run by a wonderful woman who knows all too well what childhood cancer means, provides a haven just when it is needed.

[Wes Streeting]

May I, too, pay tribute to Haven House children’s hospice, which is just outside my constituency and serves many of my constituents? Hospices are often associated with end-of-life care, but as in the case of Haven House, they also provide great support to families whose children may not be near the end of their lives and help them on that journey. They are such a powerful and important source of support, and of course they are all voluntary and rely on the public’s generosity.

[Thangam Debbonaire]

My hon. Friend is absolutely right. There are many charities across the country that do everything they can to try to help the families of children and young people with cancer. I pay tribute to them all, even though I cannot possibly know their names.

The CLIC Sargent social worker is on hand in the Bristol royal infirmary when a family receives a devastating diagnosis and is told that their child needs to start treatment right away. Such families are often many miles from home. They can arrive that night at CLIC Sargent house with nothing and be given somewhere to stay for as long as they need it, clothes and bedding if they have come without them and, when necessary, space for the whole family so brothers and sisters can be with their family and their sibling who is being treated. I am proud to declare an interest in CLIC Sargent: my beloved sister-in-law works for it. She gives her time and expertise to an organisation that has done so much for our family and many others.

Will the Minister commit to discussing with her colleagues in the Department for Work and Pensions the financial impact of childhood cancer on families, and will she use the CLIC Sargent report as a reference point? Will she further consider supporting the provision of such homes for the families of children with cancer? If those homes are essential for allowing children to be treated, we must surely consider prioritising them along with other specialist support for statutory funding, at least in part. I do not believe it is right that such homes, which are so essential, must rely entirely on the generosity of volunteers and charitable giving, although I pay tribute to people who raise money. The Government must consider providing that funding.

As other hon. Members have said, until someone has known childhood cancer in their own family, it can be difficult for them to comprehend its full impact. Yes, there are excellent briefings available from specialist cancer charities—CLIC Sargent, Teenage Cancer Trust, Cancer Research UK and other charities provided briefings for this debate. My family was fortunate. Despite an initially very difficult prognosis, that 12-year-old child is now a happy, well adjusted young man in his 20s with a responsible job and a secure relationship with his partner, but I grieve for those who are not so fortunate. I want to ensure that, whatever the prognosis, no family has to worry about money at that most difficult time. I want us to do everything we can—the Government must lead—to improve awareness, early diagnosis, treatment and support, so that one day deaths from childhood cancer end and we alleviate and reduce, if not completely eliminate, the terrible suffering that it brings. I also hope against hope that one day, no parent will ever have to hear the word “cancer”. I long for that day, as I am sure we all do.

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[Julie Cooper (Burnley) (Lab)]

It is an honour to serve under your chairmanship, Mr Davies. This debate has arisen in response to a petition signed by more than 115,000 people, including 922 from my constituency, following the sad passing of Poppy-Mai, the little daughter of Mr and Mrs Barnard. First and foremost, my thoughts are with that Lancashire family and all the other families who have endured a similar devastating loss of their children. There can be nothing worse than the loss of a child, so this debate is especially important.

It is important that we increase awareness of the scale of the problem facing children and young people who have cancer and their families, and look for ways to tackle the problems. How can we improve diagnosis? How can we improve research? How can we ensure better access to treatments? Ultimately, how can we improve survival rates? The debate, outlined so well by the hon. Member for Bath (Ben Howlett), has given us the chance to search for answers to those important questions.

In the UK every year about 4,000 children and young people under the age of 25 are diagnosed with cancer. Worryingly, research by CLIC Sargent published last year found that 44% of young people and 42% of parents felt that their local GP did not take them seriously when they presented with symptoms, and 53% of young people felt that their diagnosis had been delayed. Clearly that is not an acceptable state of affairs. Inevitably, delayed diagnoses mean delayed treatment, with implications for survival rates.

In an attempt to improve awareness among GPs, CLIC Sargent embarked on a joint project to develop an e-learning module specifically focused on cancers in children and young people. That welcome work will go some way in helping to improve diagnosis and primary care support for children and young people with cancer, but far more needs to be done. It is a fact that children in the UK with a brain tumour can take up to three times longer to be diagnosed than children in other countries, most notably the United States. Reducing the time to achieve an accurate diagnosis improves survival rates and can reduce long-term disability, which many children and young people diagnosed with a brain tumour currently experience. I hope the Minister can give us some understanding of what the Government intend to do to improve diagnosis times.

Recent figures published by Cancer Research UK demonstrate that in the past 20 years we have seen a 32% reduction in the child cancer death rate. We have also seen five-year survival rates increase from 40% in the early 1970s to 82% today. It is widely believed that those improvements have arisen as a result of more research and better treatments. While they are extremely welcome, they go nowhere near far enough, because the fact remains that cancer is still the leading cause of death among children. Five children and young people die of cancer in Britain every week, and those who survive often go on to suffer long-term side effects from their treatment that can continue into adulthood.

A considerable amount of research is carried out each year in the UK by a multitude of organisations including Cancer Research UK, the Brain Tumour Charity, the Institute of Cancer Research, the Institute for Child Health, Great Ormond Street Hospital and the Teenage Cancer Trust. Last year, Cancer Research UK committed to doubling research spending on children’s cancers. That will go some way in helping to discover new treatments. We all thank it and welcome that commitment, because currently only 3% of UK funding into cancer goes to child cancers.

It is important to remind the Government that many of those organisations are charities, which have relied on high levels of funding from the European Research Council. The Brain Tumour Charity stated that the result of the referendum on EU membership has created great uncertainty for charities conducting research into childhood cancers. Post-Brexit, the Government must ensure that the UK medical research community continues to have access to EU funding programmes once Horizon 2020 has ended. Similarly, I seek reassurance from the Minister that any shortfall in research funding as a result of our exit from the EU will be met by the UK Government. If we are to improve outcomes for children with cancer, it is paramount that we have research conducted to understand further these awful diseases.

Following improvements to diagnosis processes and research, we must ensure efficient access to treatment. Children and young people with cancer face a range of barriers in accessing new and better treatments, including drugs not being tested in their age group or in the cancers they are likely to get, even when a drug may be effective in treating their cancer. Simply challenging the age restrictions set on new trials is already increasing participation rates. That should be done in tandem with the provision of age-appropriate information about trials delivered by skilled, specialist staff.

Currently, the cancer patient experience survey does not collect data on cancer patients under the age of 16, and we have seen a 40% decline in response rates from teenagers over the age of 16 and young adults in the past five years. It is unacceptable that little or no progress has been made on this issue. Understanding patient experiences is important to improve future services. The cancer strategy includes plans to deliver a methodology to collect under-16s’ experiences, and NHS England is doing that alongside CLIC Sargent. Will the Minister helpfully update us on that work and tell us when we can hope to see the data being collected?

Achieving viable numbers for clinical trials on child cancers is understandably problematic given the relatively small numbers and rarity of some child cancers. However, we cannot allow that to be used as an excuse for not improving treatments for children and young people with cancer; instead, it should push us to innovate. Cancer Research UK has led the way in challenging the age restrictions on clinical trials, calling for more flexibility when it comes to age and ensuring that researchers justify age restrictions so that they rethink approaches to include children and young people.

[Wes Streeting]

Particularly for rare forms of cancer or brain tumours such as DIPG, it is important that clinical trials take place at scale. Does my hon. Friend agree that, after the UK leaves the European Union, the Government should seek to ensure that there is as much alignment as possible in the regulatory framework between here and the rest of the European Union so that clinical trials on the European level can continue to take place?

[Julie Cooper]

I am grateful to my hon. Friend for making that important point. It is essential that the UK’s exit from the EU does not negatively impact on further research. We must benefit collectively from work done in other countries. To pick up on the point other Members made, we must pool good practice and ensure that our good practice and successful research are shared throughout the world and that we benefit similarly from experience elsewhere.

In the cancer strategy, there were specific recommendations relating to children, teenagers and young adults’ services and how they can be improved. I was concerned, though, that in September the Government made an announcement on wider measures in the strategy but failed to mention anything about the important issue of seeking consent from children and young people for their data and tissue collection to be used in future research studies and the development of services, nor did they include a requirement significantly to increase access to clinical trials for teenagers and young adults with cancer.

Currently 30% of teenagers and 14% of young people aged 20 to 24 enter trials for common cancer types in children and young people. In 30 years there has been no progress in that area. The cancer strategy set a target for NHS England to recruit at least 50% of children and young people in cancer centres or designated units treating teenagers or young adults. That is welcome, but will the Minister give us a progress report and tell us how long it will be before the target is likely to be met?

I pay tribute to the Barnards, to the other families mentioned today and to the children and families across the UK affected by cancer for their courage in the face of this most awful of illnesses. I ask the Government to understand those families’ need for support. We have heard some moving stories today. They need support in a wide sense—from specialist units and through better access to information. Importantly, they also need financial support. Several hon. Members have powerfully made the point today that the costs of cancer are physical and emotional but also financial. We must do more and better.

I want to hear what specific plans the Government have to improve the speed of diagnosis; I want a guarantee that the Minister will protect research funding post-Brexit; and I want to know what plans she has to increase the number of clinical trials, to ensure that access to life-saving treatments is the best possible. Children and young people deserve no less.

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[Nicola Blackwood]

My hon. Friend is absolutely right. It is important to make sure that all different groups and diseases get the attention that they deserve. That takes me on to the issue of patient cohorts and the importance of collaboration across Europe.

For particularly rare diseases or cancers, it is sometimes necessary to look across borders to make sure that research includes the right numbers of patients. That has been a particular focus of the Department, and I am confident, owing to the work that we have been doing, that international—particularly European—networks and data sharing for research purposes will continue. We need to make sure that initiatives that have facilitated research, such as the paediatric medicines regulations, continue. My noble Friend Lord Prior is leading on that area of policy. I know that he is closely involved in all of those issues, and I am going to ensure that the specific concerns that have been raised today are passed on to him and are not dropped.

I assure the shadow Minister that the Chancellor has guaranteed that the UK will continue to have all of the rights, obligations and benefits that EU membership brings, including EU funding—up until the point that we leave, obviously. The Treasury has also committed to underwrite the payment of awards to UK organisations that make competitive bids to the European Commission —for example, for universities bidding for Horizon 2020. In addition to all of the funding I have spoken of, those moneys are protected.

My hon. Friend the Member for Bath made a couple of points about reviewing the work undertaken by NHS England to ensure that more children receive the treatment that they deserve. We will be working closely with NHS England and all partners to make sure that the strategy we have put in place becomes a reality and that the right performance metrics are in place, although that is a challenging process. Our best measure of success will be the cancer survival statistics. Those are currently provisional, but the Office for National Statistics will hopefully be assessed by the UK Statistics Authority in the future.

We have heard from many hon. Members of some deeply moving cases of young people battling cancer. We have heard of their courage and resilience, and of the fortitude of their parents and siblings.

[Wes Streeting]

I am grateful to the Minister for giving such a thorough and thoughtful response to the debate. As I mentioned, Kaleigh’s family are campaigning on DIPG. It would mean a lot to them if the Minister or one of her Departmental colleagues met them to talk about their experience and their hopes for how research funding in this area might improve the search for a cure going forward. Is the Minister able to make that commitment?

[Nicola Blackwood]

I am sure that either I or a Departmental colleague will be delighted to meet the hon. Gentleman and his constituents. It was moving to hear of their campaign.

Holding the Government and the NHS to account in this way could not be more important. I hope that my response has made completely clear not only my personal commitment but the Government’s wholehearted commitment to funding life-changing innovation and research into cancer, to delivering the cancer strategy in a way that transforms cancer care for current and future generations and to improving the long-term quality of life of childhood cancer survivors. That is surely the greatest memorial that we can offer to each and every one of those brave children who, like Poppy-Mai, have lost their battle with cancer. That is our task, and as I look around the Chamber, it is clear to me that each and every Member here will work as hard as they possibly can to make sure that they hold us to it.