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NHS (Wellingborough)

Volume 507: debated on Tuesday 16 March 2010

It is a great pleasure to serve under your chairmanship, Mr. Key. I thank Mr. Speaker for granting me this debate on NHS facilities in Wellingborough, which is one of the greatest concerns of my constituents.

I am delighted to welcome the Under-Secretary of State for Health, the hon. Member for Brentford and Isleworth (Ann Keen). She is widely and correctly regarded as one of the Government’s best Ministers, not only because of her genuine concern for health matters but because of her ability to get things done. I am delighted that she is here, as she has in-depth knowledge of the matter that I shall discuss in detail. I am particularly grateful to her because I know that yesterday she responded to an Adjournment debate, and that she had just been travelling all around the north-west. Rather cheekily, I put in a special request for this Department of Health Minister, so I appreciate her coming today.

When I applied for this debate, I intended to discuss a wide range of problems that we have with health facilities—or, more importantly, the lack of them—in my constituency, but an individual health case has overtaken what are otherwise extremely important matters. As I will show later, the constituency case of Zachary Knighton-Smith is a matter that just cannot wait; in fact, it is a matter of life or death.

To touch briefly on the other issues, Wellingborough does not have its own hospital with accident and emergency facilities. The surrounding areas of Corby, Kettering, Northampton, Daventry, Bedford and Milton Keynes all have one or more hospitals, all of which have major or minor accident and emergency facilities. Yet the Wellingborough constituency and the adjoining area of east Northamptonshire do not have a hospital, and, with 52,000 new homes planned for north Northamptonshire in the next few years, it will be impossible for the existing hospitals to maintain a proper standard of care.

More than 90 per cent. of the people who answered my “Listening to Wellingborough and Rushden” survey want a hospital in the Wellingborough and Rushden area. Six thousand people have written to me about the need for a hospital, and last month I presented a petition to the Prime Minister in Downing street. We really must have a hospital in Wellingborough.

The Government might correctly ask where the money will come from, but as the Minister will know, Northamptonshire has been the worst-funded primary care trust for years. In fact, according to the Government’s own national capitation formula, they have underfunded it by £175,468,000 since 2003-04. If the PCT had the correct funding, it would have no problem building a hospital in Wellingborough that would serve my constituents and relieve pressure on the acute hospitals in Kettering and Northampton. However, as I do not have enough time to pursue that matter in detail, I simply ask the Minister to take the point on board. Instead, I want to turn to a specific constituency case.

Three months ago to this day, I had a debate in this Chamber regarding a constituent of mine, five-year-old Zachary Knighton-Smith, who suffers from neuroblastoma. The treatment that he is currently receiving for this rare cancer gives him only a 20 per cent. chance of survival. Let me give the background on this little boy and what has happened since the last time we debated the issue.

Neuroblastoma is a rare cancer of the sympathetic nervous system, which is a nerve network that carries messages from the brain throughout the body. The disease is usually found in young children, and it is the most common cancer among infants. Solid tumours that take the form of a lump or mass may begin in nerve tissues in the neck, chest, abdomen, pelvis or, most commonly, adrenal gland. They may spread to other areas of the body, including bone and bone marrow.

I could continue by quoting the statistics—the disease affects only up to 100 children a year, and the current survival rate with the treatment that Zach is receiving is only 20 per cent. I could describe this horrendous disease in medical terms, but that does nothing to get across the true horror of it. For each child who suffers, the family to whom the child belongs suffer with them every step of the way. Zach’s family are a shining example of how the tremendous will of a family can operate. Zach’s cousin Chelsea died in August last year of the same disease, and they are absolutely determined not to let that happen to him.

The course of treatment is devastating. Treatment varies from patient to patient depending on their age, the stage of the disease, where the disease is in the body and the molecular biologic and cytogenetic characteristics of the tumour. I shall give one example of treatment for neuroblastoma—it is, in fact, the treatment that Zach has been undergoing.

Since being diagnosed with the disease in February 2009, Zach has had a 72-day course of chemotherapy, spending three days in hospital and then seven days at home. That significantly reduced the size of the cancerous tumour. As the doctors were unable to give a 100 per cent. guarantee that it would all be removed, little Zach underwent surgery to remove it. He had already undergone a horrific experience: he had to have high-dose, intense chemotherapy before Christmas. Unfortunately, he caught an infection at that time and the dose of chemotherapy had to be postponed until he had recovered sufficiently.

On 8 February, Zach restarted his high-dose, intense chemotherapy. What do I mean by “high-dose”? The chemotherapy, which stopped on 12 February, was given for 24 hours a day. For five straight days, and for every second of each and every day, he underwent chemotherapy. Just three days after that ordeal, he had a stem-cell transplant, which re-inserted stem cells that had been frozen before the chemotherapy was administered.

Because his immune system was completely shut down, Zach was kept in isolation throughout his recovery in hospital. The risk of infection was high and, despite being isolated, he contracted severe mucositis, which caused severe blisters of the mouth. He was discharged from hospital on 6 March and is due for scans next week to see if the residual disease in his abdomen has gone. After that scan, he is to undergo radiotherapy, which is the standard treatment for neuroblastoma. However, he still has only a 20 per cent. chance of survival. In short, Zach had chemotherapy followed by surgery, then high-dose chemotherapy followed by stem-cell transplant, and then radiotherapy, but this brave young boy still has only a 20 per cent. chance of survival.

However, as discussed in my previous debate, a new course of treatment can be given after the initial treatment. Monoclonal antibody therapy increases the survival rate to around 70 per cent. Normally, a person’s immune system makes antibodies to attack germs such as bacteria or viruses; unfortunately, it will not attack a neuroblastoma because such tumours are part of our bodies. However, an antibody that attaches to the neuroblastoma can be made in a laboratory and then given intravenously to the patient. The antibody will circulate in the bloodstream until it finds and attaches itself to a neuroblastoma cell, and then the patient’s own immune system will attack and kill the cancerous cell. The treatment has been carried out in the United States for several years and has proven very successful. Since my last debate, trials to administer the treatment have been set up in Europe, first in Austria and now in the UK.

As Dr. Gaze, chairman of the Children’s Cancer and Leukaemia Group—I know he is watching this debate closely—stated:

“There is now clear evidence, presented at the American Society of Clinical Oncology meeting last May, and shortly to be published in the New England Journal of Medicine, that immunotherapy schedules containing monoclonal antibody produce a significantly improved chance of survival in children with high risk Neuroblastoma”.

Unfortunately, Zach missed out on taking part in this trial by a matter of weeks, due to his falling ill during that first dose of chemotherapy. As the trial has strict regulations on whom it lets in, he was unable to take part. Half a dozen other children suffering from neuroblastoma were also left out of the trial.

Since the previous debate, I have been in regular contact with the Minister, and I am grateful for all the help that she has given to try to find a solution for young Zach. We are left with a couple of options. The Government could pay for Zach and the other children to go to America at a cost of between $250,000 and $800,000 per patient. With the Government spending £120 billion a year on the NHS, that is just a drop in the ocean. Were they to pay for the treatment in the United States, the NHS could save up to four times that amount in the long run. If the children did not receive that treatment and relapsed, the cost of treating them would run into hundreds of thousands of pounds. Sending Zach to America will save the NHS money. In addition, the treatment gives Zach a complete chance of survival: he will grow into a young man and will pay the Government huge amounts of money through the tax system.

A further option was suggested by Dr. Brock, a paediatric and adolescent oncologist, and Dr. Gaze. They are the leading consultants on neuroblastoma at Great Ormond Street hospital. Their idea was to enable all the children who were not in the trial to participate in a separate study set up alongside the trial, which would enable the remaining children—in total no more than six children—to receive the monoclonal antibody therapy. Any newly diagnosed cases of neuroblastoma would automatically go on to the original trial.

Last week Dr. Brock went to Europe to ask SIOPEN, the European neuroblastoma research network, to set up the study. Unfortunately, a study was not agreed to. However, in principle, a separate trial has been agreed on that will enable the other children to receive the treatment, which is exceptionally good news; but unfortunately, for Zach it will not come early enough. His treatment must commence by mid-April, which is some 30 days from today.

Dr. Johann Visser, Zach’s consultant at the Leicester Royal infirmary, where Zach is being treated, has applied for an individual funding requirement in the hope that Northamptonshire primary care trust will pay for Zach to go to New York and receive the treatment. Dr. Visser kindly copied me in on a letter about Zach that he wrote to the chief executive of Northamptonshire PCT:

“American colleagues in the Children’s Oncology Group, who under the direction of the FDA, are treating patients within a single arm study with immunotherapy but he is unfortunately also not eligible for that. Failing this we contacted the team at Memorial Sloan-Kettering hospital in New York who has a Monoclonal antibody therapy (3F8) which is administered with GMCSF. They have been very helpful and are willing to treat him”.

The other children who fell out of the original trial are now likely to go into the second trial. All the children who are now diagnosed with neuroblastoma will go into the original trial.

Zach is now clearly a unique case. He will be the only child in Britain with neuroblastoma who is unable to receive this potentially life-saving monoclonal antibody therapy—little Zach, who has been so brave throughout all this, and so determined not to let anything get him down. I have met Zach. I also have a nine-year-old son and I just cannot imagine what it would be like for my son to have gone through the sort of treatment that that little boy went through. Zach is still so joyful and hopeful. His family, who have had to go through the torture of seeing Zach’s cousin, Chelsea, suffering from, and eventually losing to, this killing disease, have been incredibly strong through all this.

I spoke to Zach’s mother yesterday; she is one of the most determined people you will meet. She said that she could not sit and watch another child die, and that she will do everything in her power to help save Zach. Like his mother, I believe that we all have to do everything in our power to save this little boy. Northamptonshire PCT is meeting tomorrow to discuss whether funding can be provided to pay for Zach to go to the United States.

Although I intended to contribute to the next debate, having heard my hon. Friend speak I should like to congratulate him on his doughty defence of the interests of this child. As a Member of Parliament, he is doing a tremendous service to his constituent and his constituency as a whole.

Coming from my hon. Friend, that is a kind compliment.

The problem is timing. Time is of the essence. We need to get Zach accepted to receive the treatment in America. I appreciate all the efforts that the Minister has made up to now. I have only one question for her: what can the Government do to prevent this little boy from dying?

It is a privilege to speak with you in the Chair today, Mr. Key. I thank the hon. Member for Wellingborough (Mr. Bone) for his kind words about my concern in this case.

I compliment the hon. Gentleman on his diligent work in relation to Zach. He takes a keen interest in health matters and he has ensured that this debate deals more with the case of his constituent, Zach Knighton-Smith, than the original wording of the debate suggested. I take this opportunity to pay tribute to NHS staff across Northamptonshire for their hard work and dedication in delivering health care services, which have shown massive improvements in waiting times and other areas because of investment.

The hon. Gentleman will be aware that Northamptonshire Teaching PCT is being brought closer to its fair share of funding. It will receive an above-average increase in funding allocations of 11.9 per cent. over the two years, 2009-10 and 2010-11. It is important to put that on the record, but now we all want to address the most important issue.

I reiterate what I said when we last discussed the case of the hon. Gentleman’s constituent, Zach, here in Westminster Hall in the last few hours of Parliament before the Christmas recess: all hon. Members and all those present today sympathise with Zach and his family and appreciate how heart-breaking it must be for a parent to discover that their child has cancer. From my own involvement as a nurse, nursing children who have such distressing diseases, I know how their families suffer. Watching little ones suffer is the worst thing we ever do.

The previous debate highlighted the fact that research into the disease has brought the good news that children diagnosed with neuroblastoma will have the chance to receive monoclonal antibody treatment in this country as part of a European trial announced in December last year. Sadly, we learned that Zach, and a small number of other patients each year, would not meet the eligibility criteria for the trial. At the time I advised that because the drug was not licensed and the treatment had not been appraised by the National Institute for Health and Clinical Excellence, the primary care trust must take the decision on whether to fund the treatment. Zach’s consultant subsequently applied for individual funding for the treatment. The investigators for the trial independently approached the Department to highlight the fact that although some patients would fall outside the trial criteria each year, there might be an alternative approach that would enable all patients with high-risk neuroblastoma to be treated with antibody therapy. We subsequently met the research team, and I was able to take the hon. Gentleman with me so that he could hear the details of the proposals.

Dr. Brock, the trial’s chief investigator in England, met her European colleagues in Austria two weeks ago and, with our support, made some proposals to enable all high-risk neuroblastoma patients to be treated with antibody therapy. I am pleased to report that I have today received a letter from Dr. Brock, which I will make available to the hon. Gentleman, explaining the outcome of her discussions in Austria. She reports that her European colleagues at the meeting agreed that all children in Europe who could benefit from the antibody treatment should have access to it. They also agreed that there needs to be a new way of making antibody treatment available to children who do not meet the necessarily stringent criteria of the current phase III trial supported by Cancer Research UK.

The proposed solution is to open a phase II trial of antibody treatment, plus interleukin 2, with much wider eligibility criteria. That should include all those with a chance of benefit who are at present not eligible for the phase III trial. Dr. Brock assures us that that will broaden access without compromising the scientific validity of the current trial, which is important if the trial is to be taken seriously.

To make the new phase II trial possible, another batch of antibody production needs to be funded. We are working on the details of funding, but as soon as it is confirmed that it is in place, the existing antibody may be used to open the trial quickly without waiting for the new batch to be manufactured and tested. I understand that Dr. Brock will have a good deal of paperwork to process to get the trial under way, and we will continue to provide what support we can to assist her in that.

Dr. Brock has advised me that she hopes to be able to open the phase II trial in the UK in time for Zach to benefit. She says that it would be reasonable for him to receive the antibody treatment starting on day 140 after high-dose treatment, which would be in line with the post-high-dose treatment timing of the European trial. The phase II trial will not have strict timelines.

I am grateful to hear what the Minister is saying, which is very encouraging. Is it conditional in any way on the Government’s agreeing to fund the new antibodies? Are the Government making a commitment to fund them? I am worried because in a couple of weeks we will shut down for the general election. Are the Government making a commitment, so that it will happen?

I hope to reassure the hon. Gentleman. Dr. Brock has also stated that if the phase II trial does not open in time for Zach in the UK, he should be able to receive the treatment in Germany under Professor Holger Lode, who will be the European sponsor of the phase II trial, and has done all the work on the humanised antibody in Europe. I am also pleased to confirm that Zach’s PCT—it will only just have received details about the proposed new phase II trial and the anticipated timelines—is minded to support funding for treatment as part of the phase II trial in this country or, if necessary, in Germany.

The proposed phase II trial will offer hope to the five or six young patients a year who are not eligible for the randomised control trial to benefit from the treatment, together with children in other European countries. I am informed that the randomised control trial is currently open in only four countries: Austria, the UK, Italy and Israel. The other countries are still negotiating with their health regulatory authorities. The UK was the first country to open after Austria, the European sponsor. I am sure that hon. Members agree that it is a testament to our long tradition of research and excellence in this country.

May I take this opportunity to express my thanks to the Minister for what she has achieved? It is extremely encouraging and a great step forward.

That is rather overwhelming. As the hon. Member for Stone (Mr. Cash) inferred, this is an excellent way of representing our constituents—working together with Dr. Brock, Dr. Gaze, Cancer Research UK and everyone who was so willing to ask, “What can we do?”, after Zach’s case was highlighted. Children who take part in the Cancer Research UK trial and the new phase II trial will join the many other children and adults involved in clinical trials of cancer treatment. It is a tribute to all those who work in the NHS, the cancer charities and the commercial sector that the percentage of cancer patients who enter trials each year is higher in England than anywhere else in the world. We are good at criticising each other in this country, but to say that that number is higher in England than elsewhere in the world is an achievement to be proud of.

When we visited Great Ormond Street hospital, we went to a meeting room, and I was asked to meet one of the little ones receiving the treatment. I met Sophie McGuire, who was having her treatment. She gave me a little bunch of flowers. One cannot go into Great Ormond Street without coming out saying, “What are we moaning about? What do we have to concern ourselves with?” I pay tribute to every member of staff who works with those children, and I thank the hon. Member for Wellingborough for taking the opportunity of this debate to highlight again such an important issue. All of us, on both sides of the House, wish Zach and his family all the very best, and hope that he has a happy, long and exciting life.