Business of the House

Debate between Ian Murray and Wes Streeting

Wednesday 27th March 2019 Commons Chamber

[Wes Streeting]

The selection is a matter for the Speaker, as the hon. Lady knows. To be clear, she is right to say that the Government said they would lay out their own path, but when they were asked, by Member after Member, on what day, for how long and on what basis, there was not a single response. The heart of the problem is the Government’s making it up as they go along.

The Government have to decide which charge they are laying at the feet of the House: either this is a remainer Parliament trying to overturn the will of the people, as the Prime Minister has claimed again and again, particularly with her incendiary statement last week, or, more accurately, this is a Parliament in which the vast majority of Members who voted remain also voted to trigger article 50, as I did, in the trust and understanding that we would have a Government who would competently manage the negotiations and reach out across the House and try to build consensus among Members of Parliament and, most importantly, the electorate.

[Ian Murray (Edinburgh South) (Lab)]

The nub of this issue is that this entire Parliament has lost trust in the Government, which is why we do not trust them when they say they will bring back motions for debate. Is not the crux of this issue that had the Government wanted to prevent any kind of historical precedent for Parliament taking control of the Order Paper, all they had to do on Monday night was simply accept the amendment tabled by the right hon. Member for West Dorset (Sir Oliver Letwin)?

[Wes Streeting]

I wholeheartedly agree.

With the limited time I have, I wish to say something about the trust that the public have in us as Members of Parliament and in the House of Commons. It is difficult, particularly when the country voted one way and some of us, myself included, voted a different way. It has been a difficult process trying to navigate our way through something that is completely unprecedented in the history of our country—trying to remove ourselves from the most sophisticated political and economic alliance the world has ever seen. It took seven years to organise a two-week sporting event, the London Olympics; it is not necessarily surprising that it has taken more than two years for us to try to negotiate our way out of the European Union.

What is completely unforgivable is the way the Government have botched the negotiations at every turn and failed to try to achieve consensus. At every single stage, when amendments have been tabled, whether on the single market or the customs union, or on different negotiating priorities and different principles, the Prime Minister has said, “It’s my way or the highway.” That is why we are in the bind we are in now. Whatever our particular views on the referendum, we all have a responsibility to try to break the deadlock, which is what the right hon. Member for West Dorset is trying to achieve—to test the will of the House to see whether there is some way to achieve consensus and to try to find a way through this damaging and unprecedented period of our history. That is the responsibility that now rests on our shoulders. All of us, when we go through the Division Lobby imminently, have a responsibility to show our country that Parliament is taking control of the process, and that we are determined, as Members of Parliament, to act in the interests of our constituencies and our countries at every point.

Whether we voted leave or remain, and whichever options we choose to vote for, we do so for one reason and one reason alone: the furtherance of our national interest—defending the jobs, livelihoods, hopes and prospects of the people who send us here. Whatever our differences, I think that this House is full of people with honour and integrity. We have the opportunity in the coming days and weeks to show that to be true.

Oral Answers to Questions

Debate between Ian Murray and Wes Streeting

Tuesday 15th January 2019 Commons Chamber

[Wes Streeting (Ilford North) (Lab)]

2. What progress his Department has made on contingency planning for the UK leaving the EU without a deal.

[Ian Murray (Edinburgh South) (Lab)]

3. What progress his Department has made on contingency planning for the UK leaving the EU without a deal.

Diffuse Intrinsic Pontine Glioma

Debate between Ian Murray and Wes Streeting

Tuesday 14th November 2017 Commons Chamber

[Ian Murray]

I thank the hon. Gentleman for his intervention. I shall come on to the subject of research and development. I have been in the House for seven years, and I live in hope of receiving a positive response from the Treasury Bench. Perhaps tonight we will get that far; indeed, I am sure that we will.

I welcome the research that is being done, but the current lack of sufficient research, available information, awareness of the condition and effective treatments can make DIPG all the more distressing for those diagnosed with it, as well as their extended families.

When it comes to treating the tumours, patients are usually offered courses of radiotherapy over three to six weeks. Because of the dangers of operating on such a critical area of the brain, surgery for some is simply not an option. In the UK, various studies show that chemotherapy is ineffective in treating childhood DIPG, although it is used in innovative ways in other countries, such as Mexico. I shall say more about that shortly.

Because the treatment options are extremely limited, the prognosis for children diagnosed with DIPG is poor. Although each child’s condition is unique, 70% of children with DIPG are not likely to survive for more than a year after diagnosis, and 90% do not survive for two years. The lack of knowledge of the condition means that children and their families are living from day to day. Greater investment in research on the condition might bring us one step closer to finding out more about the specific genes and molecules involved in DIPG tumour formation. That vital research could go on to create innovative new treatments, meaning that 40 more children each year—those who are struck down by the disease—could go on to become the doctors, scientists and even politicians of the future. It is important that we give those children the opportunities that they deserve, and give their families the hope that they need.

The famous astronaut Neil Armstrong’s daughter Karen died of DIPG 40 years ago at the age of just two, yet to date there have been very few advances in the treatment offered, which is devastating for parents. One such story is that of Luke Stewart. Luke is a seven-year-old boy who is happy, healthy, active, kind and caring. He comes from a loving family—mum, dad and two little brothers: Lewis, who is five, and Lochlin, who is just one. In January this year, their world was blown apart when Luke was diagnosed with DIPG. Doctors advised Luke’s mum and dad that he could survive for six to nine months if he received radiation treatment, the only option offered by the NHS in the UK. I cannot imagine what that kind of news does to a parent.

The family were informed that radiation treatment would prolong Luke’s life by only a few months, and that, although it would make him more comfortable, he would not survive. They were advised by the NHS that there were no other treatments available worldwide, or any clinical trials, that could help their son, and that on completion of the radiation treatment he would receive only palliative care. They were broken by that news, but they knew that they had to keep fighting for Luke, so they began to search for hope elsewhere. That was the start of their incredible journey to Mexico to save their son’s life. The journey to Monterrey began when, during a visit to the Chelsea football club training ground, they met a family from London whose daughter had the same condition. They had known of each other from Facebook conversations, but were totally unaware that both families would be at the venue at the same time. The London family were leaving for Mexico within days so that their daughter could receive a new, ground-breaking treatment.

That gave the Stewart family renewed hope. They researched the entire programme, which is called intra-arterial chemotherapy. Catheters are placed in the basilar and femolar arteries, and systematically deliver drugs approved by the Food and Drug Administration into the brain stem. The treatment has also been combined with intrinsic and T-cell immunotherapy. The Stewart family left for Mexico at the beginning of May, when they witnessed Luke’s condition deteriorating rapidly. This was the only hope that they had to offer him at that time: it was their last hope. Not only were they in emotional turmoil, having to deal with such a devastating situation, but they had to fundraise continually to secure money for the treatment.

[Wes Streeting (Ilford North) (Lab)]

The London family to whom my hon. Friend referred are constituents of mine, the Lau family. No one can imagine what a family goes through following a diagnosis of this kind, but I have been struck by how much more pressure is placed on families who are willing to move heaven and earth—and literally move across the earth—to ensure that their children have access to treatment that could potentially extend their lives, but at considerable cost. Does my hon. Friend agree that the Government should look urgently at what can be done to make sure that no families who can have access to treatment are prevented to do so by financial barriers?

[Ian Murray]

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.