Child Cancer

Ben Howlett Excerpts

Monday 28th November 2016 Westminster Hall

[Ben Howlett (Bath) (Con)]

I beg to move,

That this House has considered e-petition 162934 relating to child cancer.

It is a pleasure to serve under your chairmanship today, Mr Davies. I thank all right hon. and hon. Members present for attending.

The debate arises from an online petition on child cancer started by a couple whose child, Poppy-Mai, sadly passed away after a battle with a very rare cancer. She contracted a progressive and aggressive malignant rhabdoid tumour, which progressed into a metastatic brain tumour. The petition is entitled:

“Force child cancer to the forefront of the NHS and government funding schemes”,

and it calls for “more funding” to be made

“available in the fight against child cancer.”

It also calls for more to be done

“to spread awareness…more genetic testing and research. Child cancer needs to be at the forefront of our minds.”

At this point, it is important that I clarify to the petitioners that, as a member of the Petitions Committee, my job today is to lead the debate and not to take a position on behalf of the Committee. I promise to take as many interventions from as many Members as possible, to involve them in the debate.

One of the charities that got in touch with me before this debate was Christopher’s Smile, whose motto—“coz kids get cancer too”—shows the sad reality of childhood cancer. There is something even sadder when cancer—in fact, any disease—attacks children: they have the rest of their life ahead of them and cannot be said to have caused or encouraged cancer themselves by their lifestyle choices. However, there is a smaller national profile for childhood cancer, with less attention focused on the important signs to look out for and the ways to avoid it, than for cancers that usually affect adults, even though childhood cancer is the biggest killer by disease of children in the western world.

Child cancer recently hit the headlines when the singer Michael Bublé announced that he was taking a break from performing while his three-year-old son undergoes treatment for liver cancer. I am sure that all Members here today will join me in sending our best wishes to Michael, Noah and their family at this very upsetting time. What they are going through at the moment is unthinkable and there are many families across the UK in exactly the same position, with parents feeling helpless while wanting to do everything possible to protect their children from this dreadful and cruel disease.

Unfortunately, that sad story shows that cancer can strike anyone at any time. More needs to be done to educate all of us on what signs to look out for, so that cancer can be caught early and there is a higher chance of survival. I thank the Government for their response to the petition. I am sure that Members from all parties in the House support the Government’s ambition to lead the world in fighting cancer. More attention needs to be given to the ways that we can become the world leader, so that we can see the number of cancer diagnoses fall and the number of cancer survivors increase.

The cancer taskforce’s five-year plan to achieve world-class cancer outcomes includes many recommendations on cancer in children, including

“a possible review of CTYA services”—

that is, services for children, teenagers and young adults—

“to provide improved integrated care”,

and to seek

“consent from children and young people for their data and tissue collection for use in future research studies and development of services and…ways in which access to clinical trials for teenagers and young adults with cancer could be significantly increased.”

All these things are crucial to beating childhood cancer and improving the care received by those who contract the disease.

On multiple occasions, charities have raised with me and the Petitions Committee the importance of getting real data to help with future developments in a range of different diseases. I chair the all-party group on rare, genetic and undiagnosed conditions, so I know that this problem does not only affect childhood cancers; it also affects other areas of the health debate. It is potentially even more important when it comes to child cancer, because thankfully child cancer is rare, relative to the population. I urge the Government to look carefully at ways in which researchers can gain access to those important, albeit anonymised data as a priority.

I was pleased to read in the Government’s response to the petition their understanding that

“a cancer diagnosis can have devastating consequences for the lives of young people and their families”,

and that the Department of Health recognises that the most important thing is that

“Care should be built around what matters to the young person and their family”.

The Department is

“working closely with cancer charities to ensure patients get the support they need during and after their treatment.”

However, more can still be done to ensure that when a cancer diagnosis is received—especially if, sadly, it is a terminal diagnosis—the child is made as comfortable as possible and is able to spend time with people who love them.

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

As a parent who went through this when my son was nine, I know that the news is devastating for parents. What happens to the family around the child and the level of support that is provided are also important. I was an MP at the time, with a good salary, but a lot of people do not have that level of income, or perhaps they do not have other family members to come round. We really need to put in extra support, and not months afterwards but straight away, when parents actually get that news.

[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.

[Mark Tami]

Does the hon. Gentleman agree that it is not only the physical side of the illness that we must address, but what happens to children if they get through their illness—hopefully they do—including all the questions they will have, such as “Why has this happened to me?” and “Why do I look different?”, their reintegration into school and their anger? We might put a lot of money into addressing the illness itself, but we put very little into looking after the child afterwards. It is no accident that children who have had cancer have a higher suicide rate than those who have not.

[Ben Howlett]

I pay tribute to the work the hon. Gentleman has been doing in this area and I completely agree with him. The health benefit analysis that is at the heart of the Department of Health in a number of areas is under review—it is constantly under review—but it needs a much more holistic understanding of the costs, not just in economic terms but in terms of societal issues, including mental health and ongoing support for a child’s family for, hopefully, the rest of their life.

I welcome the Government’s focus on improving earlier diagnosis, as it makes it more likely that patients, including children with cancer, will receive effective treatment. Additionally, it is good news that the Government have committed to implementing all the recommendations of the cancer taskforce, including that by 2020 everyone referred with suspected cancer will receive either a definitive diagnosis or the all-clear within four weeks.

[Michael Dugher (Barnsley East) (Lab)]

I thank the hon. Gentleman for setting out the arguments so well. Will he join me in paying tribute to the many good organisations and charities in the field, in particular Be Child Cancer Aware, which does fantastic work on the need for early diagnosis, gives wonderful support to families and runs campaigns, including in memory of my nephew, Oliver Shaw, who died of leukaemia in 2011?

[Ben Howlett]

I will come on to awareness later. I join the hon. Gentleman in congratulating that charity and the others around the country that do huge amounts of work, often with limited resources in these difficult times.

Returning to early diagnosis, I wish to ask the Minister about the four-week all-clear or definitive diagnosis period and whether it is being performance managed and adhered to. I am sure it is. I welcome the good news that NHS England has the funding necessary to improve cancer services over the next five years, including up to £300 million by 2020 to support earlier diagnosis of cancer, and £10 billion of real-terms increases in NHS funding by 2020-21. I also welcome the recommendations in the taskforce report that give direction on where the funds should be targeted. When it comes to NHS England, performance management is crucial, just as it is in the rare diseases space. We need to know that funding will be spent on the ground on the people who really need support, particularly children who are suffering on an almost daily basis. Campaigners rightly point out that significant progress is still to be made on childhood cancer. Will the Minister confirm that the work undertaken by NHS England will routinely be performance managed on the basis of what has been said by many organisations in the sector?

Childhood cancer is, thankfully, not common, with children accounting for only 1% of cancer patients. Unfortunately, that constitutes a tiny market for pharmaceutical companies, so there are often far too few incentives for child drug development. The pharmaceutical industry generally targets the largest markets for its research and development and it wants its latest drugs to go into front-line use as quickly as possible, to gain maximum benefit from the patent protection. Although many of the genetic abnormalities in childhood cancers also occur in adults and both adults and children can be treated with the same drugs, paediatric drug development trials and availability always lag many years behind. I urge the Government to do more to encourage pharmaceutical companies to invest in research and development for life-saving paediatric drug development. Will the Minister highlight what she will do to encourage NHS Improvement to focus on that market?

Access to cross-border trials is particularly important for rare diseases such as childhood cancers, as there are often not enough cases in a single country to make a trial viable. The European Union’s new clinical trials regulation will come into force in October 2018, and will hopefully make it much easier to carry out cross-border trials, by requiring that a single application be submitted to a central point rather than one in every country. I seriously ask the Government to consider how we can remain party to that system as we exit the European Union.

The overall survival rate for children with cancer is 82% in England and Wales, but the rate varies considerably according to the different types of cancer, and by age and gender. One thing we all know about the chances of survival is that the earlier cancer is caught the more likely it is to be beaten, and the same applies to cancer in children, so I will now talk about the importance of awareness campaigns.

Awareness campaigns can be aimed at and useful to a wide variety of people. It is not just parents and family members who can benefit from improved campaigns. One of the most important things the health system can do is give a child a diagnosis as early as possible, with swift treatment where necessary. However, CLIC Sargent, the childhood cancer charity, states that parents often explain that their journey to diagnosis was far from straightforward. For example, children are disproportionately diagnosed through emergency medical care, with 53% of children aged nought to 14 diagnosed through A&E or emergency referral compared with 20% of adults. There must be something causing that large disparity. I think two issues need to be addressed.

First, there are some excellent national awareness campaigns for many of the more common adult cancers. This month is dedicated to prostate and testicular cancer for example, not just to raise funds but to highlight what men should be looking out for. There are also multiple campaigns encouraging women to regularly check their breasts and to encourage their friends and family to do so. Those campaigns must be applauded and they should be learned from and replicated for other cancers, including childhood ones. If parents are aware of and sensitive to the various early warning signs, we might see a decrease in the number of emergency diagnoses and an increase in diagnosis by GPs, who often know a child’s history far better.

Secondly, GPs need to be educated about some of the less well known symptoms, so that they can be alert when examining children. CLIC Sargent is working with the Teenage Cancer Trust and the Royal College of General Practitioners to produce an e-learning module on children and young people’s cancers for GPs across the country. I thank those bodies for their work and I encourage other organisations to collaborate similarly, to get the crucial awareness messages out there. I am sure that the Minister agrees that continuing professional development is vital for GPs and all medical professionals. If GPs are more aware and more ready to carry out further tests, we might see an improvement in childhood cancer survival.

Last year, the National Institute for Health and Care Excellence addressed non-site-specific symptoms of concern for children and young people, recommending that GPs take into account the insight and knowledge of parents and carers when considering making a referral for a suspected cancer. NICE noted that more lives could be saved each year in England if GPs followed the new guidelines, which encourage GPs to think of cancer sooner and lower the referral threshold. I ask the Government to support some of the excellent childhood cancer campaigns and charities in their aim to achieve national coverage for awareness campaigns and to reach parents and doctors through a variety of means.

Every year in the UK about 3,800 children and young people are diagnosed with cancer, 1,600 of whom are aged nought to 14. For young people, when the doctor says “cancer” normal life stops. It is a devastating experience for the whole family. The petition highlights the huge impact that cancer has on families across the country and the need for more investment, research and awareness. I urge the Government to consider how we can increase engagement with charities to encourage awareness campaigns that garner national attention, develop greater incentives to increase research and development into lifesaving paediatric drugs, and improve early diagnosis for child cancer patients.

I thank colleagues for their attendance today and in particular I thank the petitioners for highlighting this incredibly important issue. I look forward to hearing the comments of other Members and the Minister.

--- Later in debate ---

[Nicola Blackwood]

The shadow Minister has made some important points about the EU, as have a number of colleagues, and I will come on to them before I finish. First, let me complete my remarks on the amount of funding that we have put into research, because it is important that it is seen as a package. Less than two weeks ago, the Government announced a further £112 million of funding to support the skilled personnel and cutting-edge facilities needed to help at the forefront of clinical research—experimental clinical research in particular, including research into child cancers. I visited one of those facilities myself, and they are an important aspect of the research we are supporting. The Chancellor announced £2 billion additional funding per year for research and development by 2020-21 in the autumn statement, including for scientific research at universities and businesses. That is another part of the picture.

The hon. Member for Birmingham, Selly Oak, who is not in his place, spoke of the importance of precision cancer medicines. The Government agree, which is why we have funded the 100,000 genomes project, to diagnose, treat and prevent rare disease and cancer, including childhood cancers. The Government have invested hundreds of millions of pounds in that project to date and it is already making a difference—the first children with rare diseases have received diagnoses through the project at Great Ormond Street Hospital. The project promises to offer a genuine step-change in diagnosis and precision treatment, which is encouraging.

[Ben Howlett]

The Minister is being very generous with her time. I am pleased about the rare diseases aspect of what she has just mentioned. However, when engagement exercises are being undertaken with charities, it is often the case that the larger cohorts are focused on. Will she give assurances that in those engagement exercises with charities, some of the rarer cancers will also be a focus?

--- Later in debate ---

[Ben Howlett]

I thank hon. Members from across the House for their contributions today, including my hon. Friend the Member for North Thanet (Sir Roger Gale) and the hon. Members for Birmingham, Selly Oak (Steve McCabe), for Inverclyde (Ronnie Cowan), for Ilford North (Wes Streeting) and for Bristol West (Thangam Debbonaire)—I do not think I have missed anyone out. I also thank hon. Members for their interventions and the Front Benchers from the three main parties. The thoughtful words from the Minister set out what an inspiring campaign many colleagues have seen from their work as constituency MPs and from the 115,000 petitioners, in particular Poppy-Mai Barnard’s family.

Members of the Petitions Committee get an opportunity to speak in this Chamber on a regular basis about some of the really important issues that matter deeply to our constituents. Having a systematic way for constituents to engage with this place in relation to child cancer, brain tumours, meningitis B and a range of other issues has made a big difference. Their continued involvement is incredibly appreciated and has given Members of Parliament an opportunity to shout about some of the great work that local charities, national charities and our constituents are doing to improve awareness and tackle a disgraceful disease. We have heard an awful lot about research in diagnosis, and about awareness, support for families and palliative care.

While I have never had the misfortune of anyone in my family suffering from a childhood cancer, my thoughts and prayers are with those who have. Ultimately, with 260 children dying from cancer every year, I am sure all of us would love a reduction of that number to zero. One death is far too many. I thank all those who contributed to the debate, and give huge thanks to those who led and submitted the petition.

Question put and agreed to.

Resolved,

That this House has considered e-petition 162934 relating to child cancer.