Diffuse Intrinsic Pontine Glioma — House of Commons, 2017-11-14
Topic: Health
Ian Murray (Labour, Centre-left): Absolutely, and that is one of my key asks of the Government. Indeed, when a family are put in a situation where they are about to lose their child, they only have the hope of trying anything they can find, and many families, including my hon. Friend’s constituents, have made the journey to Mexico When Luke arrived in Mexico with his family, it made him the seventh child worldwide to receive this ground-breaking treatment; he was also the second child from the UK. The website makingdipghistory.com is where people can see more about this condition and its history Luke’s clinical condition on his arrival in Mexico was extremely serious. This once active, confident and independent little boy could not walk properly, was constantly falling over, and was always tired, and his previously happy demeanour had changed completely. During this period, he regularly talked to his parents about dying—no words a parent should hear from their child The family spent four months in Mexico. During this time Luke received six IA treatments and four immunotherapy treatments. The costs associated with these treatments and all living and travelling expenses were self-funded by the family as the result of the generosity and financial support they received through their justgiving.com page During this period, Luke’s clinical condition improved dramatically; he was outgoing, happy, walking without any risk of falling over, running, playing with his brothers, communicating normally with his family, and making no further mention to his parents about dying. In the time that Luke had been receiving his treatment, his tumour had shrunk, the cancer activity was lower, his new cell generation was high, and his cyst had shrunk and become pure fluid. His clinical improvement means that he can live life as a seven-year-old in the knowledge that he is 11 months past diagnosis, a point at which the NHS said he would not survive. As if it was a miracle, he is now back at school. It is too soon to tell, but Luke’s improvement is an enormous step in the right direction. Cancer treatments are by their very nature evolutionary, so do we not need to embrace this treatment instead of ignoring it? Luke’s parents had no hope—their son would die. They had to at least try. Luke and his mum, and often his grandad, Robert, now require to go back to Mexico every five weeks for a period of five days to ensure that he continues to receive these ground-breaking treatments Before and after each treatment, Luke gives a sporty thumbs-up to tell the world on Twitter that he is okay, and now people from all over the world are posting selfies at #thumbsupforluke. We can follow everything about Luke at his Facebook page, "Help Luke make history" It is important to highlight the incredible resilience of families, just like Luke’s, who do not take no for an answer and carry on fighting, searching for access to treatments that could save their child’s life. The family have asked me to express their heartfelt thanks to all who have supported Luke’s crowdfunding campaign, which has managed to raise over £180,000 of the £350,000 to fund his treatment in Mexico. There is no NHS or other Government resources to financially support families when they have to have treatment elsewhere outside the NHS So what about the future? Not only do advances in research help progress new treatments, but that will also allow us to instil awareness of this rare condition throughout our healthcare system. This will help us improve the level of support we provide to the family. It is usually left to the parents and families to search the internet for ways to find help, with most healthcare providers in the UK left with their hands tied, with limited treatments to offer. As I have mentioned, Luke’s family were incredibly lucky to have such a successful crowdfunding campaign, but that is not available to everyone, and they still need more help The level of support for families is simply not good enough. We need extra support as soon as a child is diagnosed, and it must be support which recognises the fast-acting nature of the disease. Families will experience extreme pressure on their relationships, as they have to come to terms with understanding such a rare condition, as well as the huge financial turmoil that can come with a diagnosis. DIPG, as well as other childhood brain tumours, have a huge impact, and that is why I am asking for more investment, and more research and development to create that awareness and hope of a cure So may I ask the Minister to look at developing greater incentives for research and development into DIPG, so that families and children can access the support and information that they require at their time of need? May I also raise the critical issue of funding for research as a whole? Following a debate on childhood brain tumours in this House last year, it is very welcome that the Government set up a working group, looking at how to increase the impact and quantity of brain tumour research. I look forward to the group’s second report, which is due to be released imminently; perhaps the Minister can give us some guidance about when this report might be released I acknowledge that a significant amount of money is already contributed through the National Institute for Health Research and the Medical Research Council, but much more needs to be done, and quickly. I hope that the Budget at the end of this month will contain an allocation for this kind of research. Some progress is being made with a programme called Instinct, involving pioneering research by experts from Newcastle University, the Institute of Cancer Research and the University College London institute for child health, which looks at high-risk childhood brain tumours, including DIPG. This extremely important effort is led by Dr Chris Jones, who has extensive experience in understanding the genetic basis of these tumours and what is driving tumour growth Can the Minister confirm that when the UK leaves the European Union, the UK medical research community will continue to have access to critical EU funding and collaborative programmes once Horizon 2020 has ended? Given Luke’s example, and the fact that the family have had to go to Mexico, it is essential that co-operation on research is global, so that every child in need of help can access it, no matter where they are. Could Luke’s case be the pathway for better treatments and understanding of DIPG here in this country The number of children dying from cancer each year in the UK has fallen in the last 20 years, but we must not stop here. Research is the key to our progress. It is not right that the rarer a cancer is, the less attention is paid to the funding of research. There must be a unified approach in applying the progress that is made. The rarity of such conditions means that they accumulate to a far smaller market for pharmaceutical companies, which tend not to supply the drugs that are required. Research and development is difficult, particularly in relation to children I know that it would mean a lot to Luke and his family if the Minister or even the Prime Minister could meet them to talk about their experiences and listen to their views on how research, funding and information in this area might be improved to secure a better future for all children with DIPG. Will the Minister make that commitment to meet the family? I would like to finish by paying tribute to the resilience of Luke and his family, and of all the other families who continue to fight for their children. I hope that this debate has made a small dent in raising awareness of DIPG and other killer cancers in children. Luke has a chance, his parents have hope, his extended family have pride, and we all watch and admire their strength, resilience, dignity and love for Luke. Let us use this half hour of valuable parliamentary time to make a difference to all families who are affected by DIPG and similar diseases, and to give those children hope.