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Child Cancer
(8 years ago)
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Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.
Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.
This information is provided by Parallel Parliament and does not comprise part of the offical record
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.
Steve McCabe (Birmingham, Selly Oak) (Lab)
It is a pleasure to serve under your chairmanship, Mr Davies. I begin by congratulating the hon. Member for Bath (Ben Howlett) on introducing the debate and on the thoughtful way in which he presented the arguments. I am pleased to make a short contribution. I have come at the urging of my constituent Debbie Moran, whose young daughter Abigail is just five and was diagnosed with a childhood cancer at the age of three. I understand Abigail is in remission, and we wish her and the rest of the family all the best for the future.
The figures I have seen suggest that each year more than 6,000 young people across Europe die of cancer, but by 2020 there will be nearly half a million childhood cancer survivors. I hope we will bear that progress in mind today. I welcome the work of the European Network for Cancer Research in Children and Adolescents, SIOPE—the European Society for Paediatric Oncology—and the European paediatric haematology and oncology community. I particularly welcome SIOPE’s seven-point plan to increase over the next 10 years the cure rate and the quality of survivorship for children and young people with cancer.
Like the hon. Gentleman, I hope that whatever decisions this country makes over Brexit, we will remain an active part of the important European cancer research and treatment community. As the hon. Member for South Ribble (Seema Kennedy) said, we need more innovative treatments introduced into child cancer care. We need the development of precision cancer medicine to help guide decisions on which therapies to use. We need to increase our knowledge of tumour biology and speed up the translation from basic research to clinical care. As my hon. Friend the Member for Alyn and Deeside (Mark Tami) said, we also need to improve the quality of survivorship and address the consequences of cancer treatment, such as the long-term side effects in all their various forms. Basically, we need to understand more about the causes of childhood cancers.
Although there has been significant progress over the past 50 years—the hon. Member for Bath described some of that—it has largely been achieved by using intensive chemotherapy regimens combined with surgery and/or radiotherapy. There is some evidence to suggest that patient survival has plateaued over the past five years, which hastens the demand for more innovative treatments.
The petition focuses on the problems we need to address, such as the lack of sustained and sufficient funding. As has been suggested, there is also poor access right across Europe to new paediatric drugs. Too many countries do not recognise paediatric haematology and oncology as a sub-speciality. For the sake of Abigail and thousands of children like her, and in memory of Poppy-Mai, whose parents are the originators of the petition, we need to dedicate ourselves to saying that we recognise the seriousness of the issue and that we are going to do more.
Sir Roger Gale (North Thanet) (Con)
I had not intended to take part in this debate, but having heard what I have heard, I am moved to make a brief contribution. One of the most harrowing of the many harrowing things that a Member of Parliament has to deal with, particularly any MP who is a parent, is to be confronted by desperate parents with a desperately sick infant or young adult who are begging for help and are coming to their Member of Parliament as the last resort. In the course of a parliamentary career, I suspect that most colleagues will face that circumstance. If they have not already, they will in time.
Most of us will have been faced with the need or desire to fundraise to send that child to another country, often but not exclusively to the United States, for treatment that is not available here and that may or may not be efficacious. In my case, I experienced that at second hand rather than at first hand, unlike some colleagues present, but those of us who have experienced it know only too well that people will clutch at any straw. I would do the same, and I am sure you would too, Mr Davies. If the chance of success is 10%, they will take it, because 10% is better than 0%.
What grieves me is that so much effort goes into trying to react and therefore relatively little effort goes into trying to pre-empt. There are wonderful children’s hospices around the country, and I pay tribute to them. Demelza House in Kent is fantastic—there are many others—but the object of the exercise is to try to ensure that treatment is available so that children do not need to go into hospices at all.
One case that hit the headlines not so long ago was a child who was effectively abducted from hospital care and taken first to Spain and then elsewhere for treatment, because something was not available here and was available somewhere else. That straw was clutched at, and I would have done the same. Looking at what happens overseas and thinking of those hard cases, a couple of things come out from what has been said already today. Thankfully, the scale is relatively small. Equally thankfully, the scale of individual cancers is smaller still, but that in itself creates a problem. The point has been made that drug companies are reluctant to invest in the research and generation of drugs that might not be viable because there is no real market for them.
My hon. Friend the Minister has a background in science, and she will understand the possibilities that flow from co-operation probably better than anyone in the room. Having looked at the matter over a number of years and having seen the work that the Teenage Cancer Trust has done, it seems to me that we need to pull together all the expertise and concentrate on one or two centres of excellence, so that the scale and the ability for young medics to learn are viable. It is very difficult for someone to become expert in something if they do not have a patient to study. I urge the Minister to give an indication that the Government will make a Herculean effort, in a way that there has not been before, to pull together all the strands. We also need to maximise the possibilities of international co-operation, because work is being done in other countries.
Mark Tami
Sorry for talking about my experience again, but my son was very fortunate to find a donor. He had a stem cell transplant in the end. As a parent, that was great for us, but we were with other parents who were not so fortunate and who saw their children pass away because they could not find a donor. The awful thing is that there are people out there who would be a match, but they do not know it. I want to put on the record my support for Anthony Nolan and other charities that have saved so many lives. We really do need to do more. Stem cell transplants offer a great opportunity for not only treating cancer, but other things as well in the longer term. I simply want to put on the record how important it is that that very important work carries on and that we do not have the situation in which some are fortunate and some are not.
Sir Roger Gale
The hon. Gentleman is absolutely right. He was also right to pay tribute, as I and others should have done, to the Anthony Nolan trust.
I do not often argue for centralisation, but, in this case, given the scale and the limited resources that are available, it seems that a concentration of effort might deliver more results than a dissipation of that effort.
Finally, I want to endorse what the hon. Member for Alyn and Deeside (Mark Tami) said earlier. There is a crying need for support for families from day one from the moment the diagnosis is made and the family is informed. There is a huge need for support. Some are fortunate in having large and supportive families. Others much less fortunate face terrifying circumstances and isolation.
Hannah Bardell (Livingston) (SNP)
I pay tribute to the hon. Gentleman and others who have spoken so bravely. He is making a very moving speech. On support for families, I want to bring to the Chamber’s attention my constituent, Allison Barr, who lost her son Jak Trueman last year very tragically to cancer. She has worked to fulfil his dream of having a den for siblings, because the siblings of children who are lost are often forgotten. She has done a huge amount of work in the West Lothian community to bring Jak’s dream to fruition. We must remember that many different parties are involved when people lose a child to cancer.
Sir Roger Gale
That point is very well made indeed.
I conclude by saying that co-ordination and co-operation are necessary. International co-operation is necessary, and support for families is vital. In small rural communities and in close families, support may be built in, but in cities such as London, New York, Washington and Berlin, as in any big city in the world, there are lonely people facing difficult circumstances. I cannot think of any more difficult or more harrowing circumstance than the sudden knowledge that your child is faced with a life-threatening disease. I urge my hon. Friend the Minister to do everything she can to promote the co-operation necessary to solve these problems.
Ronnie Cowan (Inverclyde) (SNP)
It is a pleasure to serve under your chairmanship, Mr Davies. I welcome the opportunity to contribute to the debate as we continue the fight against childhood cancer. I am aware that the petition, which is the subject of today’s debate, is primarily written with reference to the NHS in England. As a Scottish MP, Members will forgive me for using the debate as a chance to highlight some of the local champions in my constituency who have done so much to help raise awareness of childhood cancer. Whether we are in Scotland or England, and regardless of our party affiliation, I hope all Members can come together to provide constructive suggestions for the UK Government. I hope too that the Minister is receptive to those suggestions in the spirit in which they are given.
We know that childhood cancer is relatively rare, yet in Scotland around 150 children are diagnosed every year.
Stuart Blair Donaldson (West Aberdeenshire and Kincardine) (SNP)
My constituent Sam Dorrance was five years old when he lost his battle with cancer earlier this year. Will my hon. Friend join me in congratulating Sam’s brother, Ethan, who has raised £10,000 for CLIC Sargent, and also Sam’s family and friends who have raised more than £65,000 for Super Sam’s fund for research into high-grade brain tumours?
Ronnie Cowan
Absolutely. I had the privilege of meeting the family when they were here for the British Red Cross event a couple of weeks ago. They are an inspiration and an example to us all.
The 150 individual cases that I mentioned mean 150 new families having to deal with the devastating consequences of illness every year. It is not only the health aspect of cancer that families must overcome, but the immense emotional and financial turmoil that the diagnosis can bring. Many parents will face extreme pressure on their relationship, in some instances leading to a breakdown of the family unit. Others will be forced to give up work. Combined with the additional costs of caring for a seriously ill child, it may mean that the family is pushed into poverty.
At this point, I want to address the Minister. In the Government’s response to the e-petition, they say that children and teenagers with serious or critical illness such as cancer are also expected to apply for disability living allowance or the personal independent payment. Is there some way we could have a simple process whereby a diagnosis becomes a tick in a box so that people do not have to apply for PIP or DLA? It should be a given that they need financial support. We know that and we should take one of those burdens off them.
Along with the child and the parents, siblings too will experience disruption in their own lives, including educational difficulties. Although we are able to quantify that there are 150 new cases in Scotland every year, we can never quantify the wide-ranging implications. It is encouraging that survival rates are improving, but I am sure we can all agree that we can always do more.
I am pleased that the Scottish Government are absolutely committed to providing the best possible care for children and young people with life-threatening illnesses in Scotland. I trust that different NHS bodies north and south of the border have a mechanism whereby they can share best practice on childhood cancer. Perhaps the Minister will outline whether that is indeed the case. Let us not stop at sharing best practice north and south of the border: we need pan-European, and in fact global, co-operation. It would be appalling to think that good substantial research anywhere in the world was not shared so that everybody could benefit from it.
In my constituency of Inverclyde, we have a champion who is helping to raise awareness of childhood cancer. Nathan Mowat was diagnosed with acute lymphoblastic leukaemia shortly before his fourth birthday. Since then he has endured hours of chemotherapy treatment and will need at least a further year of maintenance treatment. Chemotherapy can have a harsh effect on the human body. In Nathan’s case, it means that even a minor illness can now have serious ramifications for his health.
Nathan, with the support of his mum Gillian, his dad Paul and his sister Annabel, has managed to rally a huge amount of support within Inverclyde. In September, the Greenock Telegraph, Greenock Morton football club and a range of prominent local businesses and organisations pledged to glow gold and help Nathan raise awareness of childhood cancer. Glow gold was a great success, not only because it rallied community support, but because it made more people aware of the practical issues that people face as a result of childhood cancer. Whether in respect of bereavement, research, diagnosis or resources, we need an open discussion on how we can continue to improve our approach.
Finally, I thank Nathan for all his great work in Inverclyde. I look forward to seeing him fully overcome his illness. He will continue to inspire many people, and I am sure my parliamentary colleagues will join me in wishing him and his family the best for the future.
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.
Thangam Debbonaire (Bristol West) (Lab)
I thank the hon. Member for Bath (Ben Howlett) for his introduction and other hon. Members for their personal and heartfelt speeches and interventions. In particular, I thank the parents of Poppy-Mai, who started the petition and so brought this matter to the attention of the House.
My five asks are clear. First, more units such as the specialist one in Bristol for teenagers and young adults with cancer are needed. The units need to be carefully commissioned so that the maximum amount of specialist clinical knowledge is available to the maximum number of young people.
Secondly, a clear commissioning structure for services for children, teenagers and young adults with cancer is needed, so that everyone knows where the buck stops and who is responsible. Thirdly, the benefit system needs to be adjusted, as other hon. Members have said, so that the families of children and young people are not put into awful financial difficulties such as we have heard about just at the time when they most need to concentrate on their child and nothing else.
Fourthly, Government leadership is needed—I urge the Minister to respond to matters raised by me and other Members—with commissioning guidance, clear priorities and funding for specialist services. Fifthly, the Government need to take responsibility and say how we will go about researching childhood cancers in collaboration with European Union partners after we leave it.
Earlier this year, I visited the specialist teenage and young adults unit in Bristol, accompanied by Christine from the Teenage Cancer Trust, which contributed to the cost of the unit. The unit creates and maintains an environment that provides care for the whole person, helping that young person to cope with the emotional side of their illness, as well as giving them time and space to do school work, to be with friends and family, and to just be a young person not defined by their cancer.
The decor definitely does not make the unit feel like a cancer ward. Yes, per patient, that is more expensive than adult cancer wards. Thankfully, cancer is rare in childhood and youth, but young people have very different specific needs to be met.
Mark Tami
As my hon. Friend is making clear, we have to have specialist centres, but we must not think that we can have them on our doorstep everywhere. That will just not happen, and it would not make sense for it to happen. If we have specialist centres, however, people will have to travel, and families need support and somewhere to stay. I put on record my support for the Ronald McDonald House Charities, which do incredible work providing parents with somewhere to stay. The actual cost burden on parents alone for what can be long treatment periods is astronomical, and a lot of people simply do not have the money.
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.
Martyn Day (Linlithgow and East Falkirk) (SNP)
It is a pleasure to serve under your chairmanship, Mr Davies. I thank the hon. Member for Bath (Ben Howlett) for opening this interesting and emotive debate, which was scheduled by the Petitions Committee. I am grateful to him for clearly explaining the issue and highlighting that unfortunately, the rarer the cancer, the greater the resource challenges it faces, and that development of paediatric drugs lags behind the development of drugs for adults.
It is a pleasure to follow such informative and powerful contributions by the hon. Gentleman and other participants from both sides of the House. I am particularly grateful for a couple of the points that have been made. I thank the hon. Member for Birmingham, Selly Oak (Steve McCabe) for putting this into the European context. Although we deal with small numbers in our country, childhood cancer is a much larger problem across that wider area. I am grateful to the hon. Member for Bristol West (Thangam Debbonaire) for illustrating the scale and challenge of the financial difficulties that people face. Unfortunately, the burden of relieving those all too often falls to charitable organisations rather than the state.
I offer my condolences to Mr Barnard and his wife on the sad loss of their daughter Poppy-Mai. I thank them for raising awareness of this important issue with the petition that brings us here. It must be very traumatic for them to relive each moment of that tragedy as they hear this debate. Unfortunately, theirs is not a unique case—such cases occur all too often across our countries. We must therefore recognise our shared responsibility to tackle child cancer.
The Scottish National party Government are working hard to improve cancer outcomes for children as well as the entire population of Scotland. As my hon. Friend the Member for Inverclyde (Ronnie Cowan) illustrated, cancer is relatively rare in children. Childhood cancer accounts for less than 1% of all cancers in Scotland, with approximately 150 new cases every year. There are approximately another 180 new cases in young adults aged between 16 and 25. An updated cancer plan for children in Scotland was launched earlier this year, which will complement the ongoing “Getting it right for every child” programme to ensure that Scotland’s children have access to the best possible services.
In recent years, the system in Scotland for supporting children suffering from cancer and their families has been reorganised. All cancer treatment centres now work together as one single managed service network for children and young people with cancer—the MSNCYPC, which may be the longest acronym I have ever used. As a result, young patients have access to appropriate specialist services that are as local as possible and both safe and sustainable. The network ensures that the care pathway is as equitable as possible, regardless of where in Scotland people live.
The SNP Government are focused on improving health outcomes for children, which is at the forefront of the SNP’s health priorities. We are serious about improving cancer care and treatment, which is a key reason why the Scottish Government will invest £100 million over the next five years through their new cancer strategy. As well as providing funding to health boards, we invest in a range of areas to support healthier lives for children and families, such as children’s palliative care, the cost of which is rising—delivering lifeline care and support to seriously ill children cost nearly 10% more in 2015-16 than the previous year.
That support for children’s palliative care charity funding is in stark contrast with what is happening in England. Barbara Gelb OBE, the chief executive of Together for Short Lives, says:
“We believe that ministers should follow the example of the Scottish Government, which has recently committed £30 million funding to Children’s Hospice Association Scotland (CHAS) over the next five years. We’re calling on the UK government to re-examine funding arrangements as a matter of urgency and carry out a national inquiry into the state of children’s palliative care funding in England.”
I hope the Minister will address that comment.
I commend the work of the many charitable organisations that are active in this field. For example, as others have highlighted, CLIC Sargent does tremendous work to support young people and their families as they come to terms with cancer diagnoses and journey through their treatment. In Scotland, leukaemia is the most common cancer in children—leukaemia, brain tumours and lymphomas account for more than two thirds of child cancers. The Brain Tumour Charity conducts various research projects and focuses on understanding the causes of childhood brain tumours. I take this opportunity to commend its investment of more than £18 million in its many research projects. Its commitment and work means that a brain tumour diagnosis no longer means a death sentence. Although that is welcome, it is sadly not the case for everyone, as has been evidenced.
Whole communities in my constituency were devastated by the tragic loss of five-year-old Tilly from Linlithgow, whose case echoes the points made by the hon. Member for North Thanet (Sir Roger Gale). Tilly lost her brave fight against her brain tumour just a few weeks ago, leaving her family heartbroken and touching the hearts of entire communities. A family member spoke to the Journal and Gazette, the local newspaper, about the support the family had received from the local community, which included fundraising to send Tilly to the United States, which is all too often the case. They said:
“We really could not begin to thank people enough for the support they have shown Tilly and the family during all of this. It has been overwhelming and we will be forever grateful. To raise such a massive amount of money shows how much people care and how communities come together when people need them. The money that is left over will be given to raise awareness of the type of brain tumour Tilly had and to help families who find themselves in a similar situation so they can get treatment for their loved ones.”
That action shows the strength of community feeling, which is echoed by the sheer number of people who signed the e-petition. It also shows how a child cancer diagnosis, with all its consequent personal and emotional devastation, affects more than just the child and their immediate family; it affects entire communities.
I thank all right hon. and hon. Members who have taken part in today’s consensual and informed debate, which I hope and trust has helped to raise awareness among the wider public.
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.
The Parliamentary Under-Secretary of State for Health (Nicola Blackwood)
It is, as always, a pleasure to serve under your chairmanship, Mr Davies.
I begin by acknowledging and thanking the many thousands of people who have supported the petition in memory of Poppy-Mai Barnard. I extend my deepest sympathies to Poppy-Mai’s family and friends. I also thank my hon. Friend the Member for Bath (Ben Howlett) for the thoughtful way in which he presented the petition. The debate has been moving. I shall do my best to respond to as many comments as possible; if I fail, I shall write in response.
I acknowledge the success of Poppy-Mai’s family in raising more than £100,000 in her name, with the aim of building a sanctuary for children with terminal illnesses and their families to make memories. I know that they would, in the spirit of the petition, want action to ensure that fewer and fewer children have to suffer from cancers, and that they would want to know that the Government are investing in key research and innovation to that end. I hope that there is some comfort to be derived from hearing of the work of the NHS and its partners to benefit children and their families in the future. I thank colleagues on both sides of the House for their moving and highly informed contributions and all who have bravely shared personal stories. They remind us forcefully of why we must fight harder in the battle against childhood cancer. The importance of that cannot be overstated.
At this point, I want particularly to respond to the hon. Member for Alyn and Deeside (Mark Tami), who made some extremely important and pertinent points, in particular about ensuring that there is the right support for families. They must battle on many fronts, not only at the point of diagnosis but in the longer term. As the Minister responsible for mental health I share the hon. Gentleman’s view that we must do better in taking into account the mental health implications of long-term and critical illness. I shall certainly take up his challenge to consider the issue of higher suicide rates among childhood cancer survivors. At the moment we are in the process of refreshing the suicide strategy, targeting vulnerable groups. I shall consider the issues that the hon. Gentleman raised.
We can take heart from the fact that we are making progress in a number of areas. National statistics reveal a general trend of increasing five-year survival for children aged up to 14 diagnosed with cancer in England. In 1990 only 67% of children diagnosed with cancer survived five years; in 2009 that had increased to 80.9% of children. The figure was about 40% in the 1970s, which enables us to understand how far we have come. However, some types of children’s cancers, as we have heard, remain hard to treat, with longer-term physical and psychological consequences. In the past few decades we have improved our understanding of the consequences and have been able to manage them better; but we must and can do better. As the hon. Member for Birmingham, Selly Oak (Steve McCabe) said, we need to speed up the translation of basic research into patient care, and to improve the quality of survivorship.
As my hon. Friend the Member for Bath said, the five-year cancer strategy for England is at the forefront of our efforts. That was produced on behalf of the whole cancer community by the independent cancer taskforce. It is our aim through that strategy to save an extra 30,000 lives of all ages by 2020. The taskforce, as hon. Members would expect, brings together all the major players supporting people with or at risk of cancer. It includes patient groups and voluntary sector organisations, which we know are crucial to the support of cancer patients. I join colleagues in paying tribute to Oliver, the nephew of the hon. Member for Barnsley East (Michael Dugher), and to Be Child Cancer Aware, Anthony Nolan, Cancer Research UK and many other charities that do so much in this area. Without the outstanding work of many medical charities, our work would be less robust and innovative and there would be less hope of bringing about the step change that we need.
The strategy was published in July 2015 and was followed by an implementation plan to take it forward in May 2016. The first annual report was published last month. The Government accepted all 96 recommendations of the strategy, some of which are directly related to children, including a review of children’s and young people’s cancer services to inform actions. The aim is to deliver improvements across the cancer pathway and to improve the quality of care and survival rates—to make exactly the Herculean effort, and with the same co-ordination, called for by my hon. Friend the Member for North Thanet (Sir Roger Gale).
I am relieved that the taskforce found that cancer services for children and adults, and the outcomes in those services, have improved in recent years. The strategy is specifically designed to build on that momentum. Many of the recommendations relate to all cancers and cancer services; but of course some are relevant to, and greatly benefit, children and their families in their experience of care, and improve outcomes.
NHS England is leading the health and care system in delivering the strategy and investment is being targeted to support that. Key elements include: investing up to £300 million a year by 2020 to increase diagnostic capacity to meet a new faster diagnostic target—many people have spoken of the importance of early diagnosis —so that all cancer patients will be given a diagnosis or the all-clear within 28 days of GP referral; investing £130 million to modernise radiotherapy across England, ensuring that over the next two years older Linac radiotherapy equipment being used in hospitals will be upgraded or replaced, so that patients get access to the latest leading-edge technology regardless of where they live; establishing cancer alliances throughout the country to drive clinical leadership; and supporting the national cancer vanguard to test new models of care.
A theme of the strategy is the improvement of information on services and outcomes, including, from 2017-18, exploring approaches to collecting data on the experience of care of children who are cancer patients.
Thangam Debbonaire
On the point about upgrading Linac machines for radiotherapy, one of the key problems that Cancer Research UK raised with me was radiographer and radiologist staffing shortages. Can the Minister add anything to reassure us that when the Linac machines are upgraded there will be sufficient staff?
Nicola Blackwood
There is also work being done on making sure the workforce are in place; and there is an overall strategy with Health Education England to do that. I am happy to write to the hon. Lady to give her details. I am slightly concerned that I have a lot to get through and I am going to bore everyone.
The taskforce has also recommended a new drive to deliver chemotherapy e-prescribing, which makes a significant difference to the experience of families who are supporting children being treated for cancer. Providers are working to implement plans for children by September 2017. Under the strategy, proposals will have been developed by March 2017 to improve the transition of young patients with cancer between children’s and adult services. As the hon. Member for Bristol West (Thangam Debbonaire) has said, transitions continue to pose a problem in some areas, with paediatric services stopping at 16 in some hospitals, but adult services not starting until 18. In addition, pathways between specialist centres and shared care units currently cause great difficulty for patients. The strategy says that there is a need to address that, and I hope that the hon. Lady will be reassured that work is being done on it.
An important recommendation of the strategy is that NHS England, the National Institute for Health Research and cancer research charities should work together to consider how to achieve a significant increase in access to clinical trials for teenagers and young adults with cancer—the shadow Minister, the hon. Member for Burnley (Julie Cooper) spoke about that. A far smaller proportion of teenaged and young adult patients than of younger children take part in clinical trials. There is obviously an opportunity that we need to grasp. The strategy recommends that we explore ways in which clinical trials for children and young adults with cancer could be significantly increased. As the shadow Minister said, NHS England should set an expectation that all centres should aim to recruit at least 50% of their patients for those trials by 2025. That is the target that we are reaching for.
Outside London, only four centres treat more than 100 children with cancer a year, across all types of cancer. The strategy recommends that NHS England, working through the children, teenagers and young adults clinical reference group, should consider whether outcomes could be improved through further reconfiguration of services, as the shadow Minister said. Any review should again be based on patient outcomes, including patient experience, as few centres offer comprehensive specialist services for children at the moment.
Many hon. Members have rightly called for research to be prioritised in that context. It is good that, since 2010-11, we have increased annual investment in cancer research through the National Institute for Health Research, including research into childhood cancers, from £101 million to £142 million. However, we know that a lot more needs to be done if we are to deliver the changes that we want to see. That is why the Government announced the largest ever investment in health research in September— £816 million over five years from April 2017. Some 20 NHS and university partnerships across England have each been awarded funding through the NIHR, and we expect to see significant research activity in childhood cancers within that programme of investment.
The NIHR is also collaborating with three charities—Teenage Cancer Trust, Children with Cancer UK and CLIC Sargent—to identify gaps and unanswered questions in research into young peoples’ cancer and to then prioritise those gaps that patients and clinicians agree are the most important. The initial survey opened just last month, so we expect to see progress on that soon.
A new working group has brought together clinicians, charities and officials to discuss how we can increase the level and impact of research into brain tumours, including those in children. The group first met in October and the Government anticipate that it will complete its tasks by September. I will be co-chairing the next meeting in January with the Department of Health’s chief scientific adviser, Professor Chris Whitty, to make sure that we make the progress needed.
Julie Cooper
Does the Minister agree with the important comments made by brain tumour charities that EU funding is fundamental, and will she commit to ensuring that, should we not have access to EU research funding post-Brexit, the UK Government will make sure that that gap is filled?
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?
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.
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.