Neuroblastoma

Jim Shannon Excerpts

Tuesday 23rd January 2018 Commons Chamber

[Kwasi Kwarteng (Spelthorne) (Con)]

I am honoured to be called to speak in this Adjournment debate. It is a great honour, as a Member of Parliament, to be able to make representations in this House on local cases, and this particular case is something I have been very much affected by. I have met the parents of the young boy concerned, and I would be grateful if the House allowed me to explain the nature of the case I am here to plead this evening. I wanted to hold this debate on funding for the treatment of children who are diagnosed with neuroblastoma, a specific form of childhood cancer. It is very debilitating, arises in immature nerve cells and is the third most common type of childhood cancer, affecting about 100 children every year in Britain.

Members may be familiar with the case of Bradley Lowery, a young boy from Sunderland who struck up a friendship with the England footballer, Jermain Defoe, after appearing as a Sunderland mascot. Bradley suffered from neuroblastoma and his cheerfulness and great courage touched the hearts of so many people. Very sadly, Bradley passed away last year. He was only six years old, but in his short life he touched the hearts of millions.

It can be very difficult to spot the early symptoms of neuroblastoma, as they can be vague and mistaken for other childhood conditions. There are options to deal with the illness, but the case I briefly want to describe involves a young boy, Alfie Ward, who is now 15, and who lives in my constituency in Ashford. He is now battling this disease for the third time. The problem we have is that the NHS, under its current dispensation and policy, funds treatment only in the first instance. However, as Alfie started nursery, having battled the disease and survived this appalling affliction, it became apparent that it had come back.

At this point, I want to make the case for the NHS to review its policy on not funding relapses. As I understand it, about half the people who suffer from this appalling illness relapse, if they recover. It seems very harsh to adopt a policy whereby people can be funded the first time that they are affected by the illness, but not for subsequent relapses. In Alfie’s case, he has been denied treatment. As I said, this is the third time that he has had the illness. Now he, his family and his parents are under the extreme pressure of having to raise something like £600,000 so that he can get treatment.

In wrapping up my remarks, I want to say that £600,000 is a huge amount of money. It is to their eternal credit that Alfie’s parents, who I have met—

[Jim Shannon (Strangford) (DUP)]

rose—

[Kwasi Kwarteng]

I am happy to give way to the hon. Gentleman.

[Jim Shannon]

I could not let the debate go by without commenting on a young gentleman in Northern Ireland. Some things in Northern Ireland cross the barricade, and one of those was the touching story of young Oscar Knox, whose battle with neuroblastoma touched people from every part of the Province and in whose memory I stand in this House today. Does the hon. Gentleman agree that we must do more to fund the treatment of this cancer in the United Kingdom of Great Britain and Northern Ireland, instead of parents having to try to raise money to help their children? We must look towards more treatment options as well. Does he agree with that? I know the answer.

[Kwasi Kwarteng]

I am delighted that the hon. Gentleman has made representations from his part of the country. People face this problem across the country. It is not widely known, because the absolute numbers are not great, but the suffering is severe. We absolutely have to try to think of a way to reach an accommodation on funding, because £600,000 is a huge amount to raise.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health (Steve Brine)]

I congratulate my hon. Friend and parliamentary office neighbour, the Member for Spelthorne (Kwasi Kwarteng), on securing this debate on such an important issue.

It is a privilege to be cancer Minister—I hear some of the worst and some of the best. We know that cancer is a disease that will affect most of us, either directly or indirectly, at some point. I suspect it will affect everybody in the House tonight. That is particularly true, and somewhat inevitable, as the population ages, but it is especially heartbreaking, is it not, when cancer afflicts children and teenagers, as it has his constituent Alfie? I have young children myself, and I cannot help but think about that.

Neuroblastoma is an uncommon cancer—there are about 95 cases in the whole of the UK each year—but it has one of the lowest survival rates of all the childhood cancers, and that is why raising awareness of it is vital and why I thank my hon. Friend for bringing it to the attention of the House. As he says, it is always a privilege to speak here and to raise issues on behalf of constituents.

I will come in a minute to how we are prioritising investment, which is so important, in research and improving access to drugs for cancer, particularly those that are less survivable. First I would like to pay tribute to the Bradley Lowery Foundation—my hon. Friend mentioned Bradley—which is providing fantastic support to Alfie’s family, for which I thank it. As a football fan myself—okay, I am a Spurs fan—I saw several times how Bradley’s smile lit up many football grounds, including his own in Sunderland, before he sadly lost his own battle against neuroblastoma, as my hon. Friend said. His legacy is the tremendous awareness of this rare cancer that he raised in his short life. He encouraged a huge amount of fundraising for treatment and research that will help so many children. I often think, whether we live for 100 years or 100 minutes, we all in some way change the world we are born into, and that is certainly true of Bradley’s life.

In England, we want something that is very difficult but quite simple to convey: we want to have access to the best cancer services in the world, especially for children and young people who have to face this disease so early in their lives. That is why the Government—this Prime Minister, the previous Prime Minister, the Secretary of State and I—have prioritised cancer services. Since 2010, we have seen year-on-year increases in the number of people surviving. At the end of last year, this country had its best survival figures ever, which is of course something to be pleased about, but just one person who is battling cancer will not feel like that.

We know that there is a huge amount more to be done. NHS England is leading the health and care system in implementing every one of the 96 cancer strategy’s recommendations with the aim of achieving our ambition to save a further 30,000 lives a year by 2020—although if we can do more, we should. NHS England has committed some £600 million to support the delivery of the strategy. No one will hear me speak about cancer without mentioning early diagnosis, which is the most crucial factor that we know of in successfully treating neuroblastoma or any other cancer.

In 2016, some £200 million was made available to the new cancer alliances, challenging them to encourage innovative ways in which to diagnose cancer earlier and to improve the care for those living with cancer. That is so important. Members will have seen the television campaign by Cancer Research UK, which includes the words “A mum with cancer is still a mum.” Many people are battling cancer, but they are still living their lives. It is always important to say that. The funds are also intended to ensure that all cancer patients receive the care that is right for them, and we are rolling out one-stop shops throughout the country. We have invested some £130 million in upgrading and replacing radiotherapy equipment, to ensure that patients have the best and latest equipment regardless of where they live.

Cancer services for children and young people, including the treatment of neuroblastoma, are specially commissioned by NHS England. Neuroblastoma is often treated with radiotherapy. In 2013, a £23 million fund was used to improve access to intensity modulated radiotherapy, a precise form of radiotherapy that can be directed more accurately at cancers and allows a higher dose of radio- therapy to be given with, hopefully, fewer side effects. That is particularly important to very young children, who may have weaker immune systems and who are less resilient to more invasive treatments.

[Jim Shannon]

I thank the Minister for his endeavours. It is always a pleasure to listen to his response to any constituency issue. In England, responsibility clearly lies with him, but is there any possibility of discussions with the regional Governments with a view to joint working, whatever their role might be? I think of young Oscar Knox in Northern Ireland, and that is really my reason for making the suggestion.

[Steve Brine]

I am glad that the hon. Gentleman is here. He raised the same point last week during the Westminster Hall debate on blood cancers, to which I responded. As he had to leave before I did so, I will repeat what I said then. Obviously, once devolved government returns to Stormont and there is a Health Minister in the Northern Ireland Executive, I shall be happy to meet him or her, and I am sure that the hon. Gentleman would like to be involved in that meeting. We shall then be able to talk about some of the successes that we have had in England and some of the things that I am sure we can learn from Northern Ireland.

An even more precise form of radiotherapy that can be used in neuroblastoma treatment is proton beam therapy. It sounds like something out of the future, and in many ways it is, but the future is coming. In 2012, the Government provided some £250 million for the building of two PBT centres in England, at University College Hospital here in the capital and at the Christie cancer centre in Manchester. I had the privilege of visiting the Christie last year—I happened to be there in the autumn, for some reason—to see its new PBT facilities, which are incredible and which will be providing treatment for patients later this year. As a result, the NHS will no longer need to send young patients to the United States—which has caused great upheaval to patients and their families, has had an impact on patient outcomes and has, of course, involved huge expense to the families and the NHS—for this cutting-edge treatment.

My hon. Friend the Member for Spelthorne spoke about guidance from the National Institute for Health and Clinical Excellence. We want the very best new innovative treatments, such as the promising antibody therapy we have heard about today, to be available on the NHS. NICE is the independent body that provides guidance on whether drugs and other treatments represent a clinically effective and cost-effective use of resources in the NHS—a publicly funded health system. I am advised that NICE is currently considering two antibody-based treatments for neuroblastoma. It is appraising Dinutuximab-beta for use in high-risk neuroblastoma, but the appraisal has been delayed as NICE awaits additional evidence from the drug company. Final guidance on the use of any drug can be issued only after careful consideration of all the available evidence and extensive engagement with stakeholders. That has to be the right approach, however frustrating it is. Another drug used in the treatment of high-risk neuroblastoma is dinutuximab or Unituxin. NICE’S appraisal of this drug, which is in the same family as Dinutuximab-beta but is distinctly different, has also been suspended as demand for the drug in the United States has exceeded expectations and is outstripping the company’s ability to meet global need.

I stress that just because drugs are not routinely available to patients on the NHS that does not preclude their use. Clinicians can make a case on a patient’s behalf for exceptional funding if they believe a particular treatment would deliver the best clinical outcomes. I understand that Alfie’s consultant is looking at doing that. Individual funding requests made by a supporting clinician are always a potential route for access to treatments that are not currently commissioned by the NHS. NHS England is not aware of any IFR in Alfie’s case, but I will be happy to make it so, working with my hon. Friend, following tonight’s debate.

Despite the strides we have made in increasing overall cancer survival rates, we recognise that there are some cancers where progress has been far too slow. That is why our focus for these cancers is on research and innovation, and ensuring that proven innovations, once they are discovered, are adopted swiftly across the health service in England. I am pleased to say that the Government are fully supportive of the Less Survivable Cancers Taskforce, which I launched last summer here in the House, specifically to address the survivability gap between the least and the most survivable cancers. I met the taskforce just before Christmas to discuss how we can work together to raise awareness of the symptoms of cancer and how we can ensure that less survivable cancers have better access to research funding. That is a promising workstream. The taskforce is a cutting-edge group and I look forward to working with it.

Cancer Research UK is also funding research to better understand childhood cancers such as neuroblastoma. In September 2016, the Government announced the largest ever investment in health research infrastructure—£816 million over five years from April 2017 for 20 National Institute for Health Research biomedical research centres in England. That was a big step, and I am sure hon. Members recall the Prime Minister’s announcement. That includes £61.5 million in the biomedical research centre at the Royal Marsden Hospital here in London and the Institute of Cancer Research. The NIHR spent £137 million on cancer research in 2016-17—an increase from just over £100 million in 2010-11. That investment in cancer research is of huge importance and constitutes the largest in a disease area.