---

Mr. Bob Blizzard (Waveney) (Lab): I rise briefly to pay tribute to the work of the Ellie Savage Memorial Trust, a charity based in my constituency and established just last year in memory of Ellie who tragically died of a brain tumour when she was just 14 years old. From what I have been told, her circumstances were similar in many ways to the circumstances of the young lady described by the hon. Member for Buckingham (Mr. Bercow). Ellie first became aware that something was wrong when she suffered an epileptic fit, but she was told not to worry too much. Many youngsters in their teenage years suffer in that way, but Ellie found out some time later that she had a brain tumour that was inoperable. She eventually died about a year after the problems were first brought to the attention of the medical authorities.

Ellie's family discovered in the course of her illness, as I guess many families have, that there is a shortage of support services; there is not a good network of support and there is a lack of readily available information. As the hon. Gentleman pointed out, there is a dearth of good, dedicated medical research.

I ask my hon. Friend the Minister to pay particular attention to this aspect of health and of the national health service. In particular, will he consider how best the NHS can work with charitable bodies, such as the Ellie Savage Memorial Trust, to fund more research, to provide proper networks of health advice and information, and to establish better screening facilities? The trust certainly thinks that more children and youngsters now die from brain tumours than from meningitis and possibly leukaemia. My hon. Friend will have the figures for that, but it is clearly a serious problem that demands attention. Can the NHS work closely with bodies such as the Ellie Savage Memorial Trust? Like the charitable trust founded in the hon. Gentleman's constituency, they are determined to do something to help others in memory of the loved ones that they have lost.

9.38 pm

Bob Spink (Castle Point) (Con): It is always an honour to follow the hon. Member for Waveney (Mr. Blizzard) who spoke so passionately and wisely on this important subject. My hon. Friend the Member for Buckingham (Mr. Bercow) will know that I have tabled many questions on neurosurgery over the weeks and months that have gone by. I am delighted that we have such an excellent Minister—the Under-Secretary of State for Health, the hon. Member for South Thanet (Dr. Ladyman)—to respond to the debate. I notice how carefully he is listening to it.

I declare an interest: my son is a London neurosurgeon and spends some of his time removing nasty things from children's heads. He and surgeons like
 
26 Apr 2004 : Column 725
 
him know how very important this subject is and how painful and serious the outcomes often are for families. No one can imagine how terrible and traumatic it can be for parents and the wider family to lose a child in such circumstances.

I therefore warmly congratulate my hon. Friend on introducing this important debate and on describing so movingly what happened to a young girl in his constituency.

I know how important this issue is and, as my hon. Friend said, how crucial it is to get more funds into research in this area. I know, too, how important it is to increase the number of consultants coming into neurosurgery. As the Minister knows, because he is burdened with responding, I have tabled quite a number of questions on that subject over recent weeks. I know also how important, and difficult, diagnosis is. MRI is a good, non-invasive method of diagnosing tumours, but it is not very child friendly: children are often frightened by the noise and paraphernalia that go with it, so spiral CT methods are sometimes much better. However, we need more MRI and spiral CT equipment to diagnose tumours so that when children present with persistent headaches and other symptoms—other hon. Members have described those adequately, so I will not go into them—GPs and even, perhaps, opticians will be able to refer them for investigation more easily, quickly and efficiently.

One specific area of research which is very important is the timing of surgical intervention for low-grade tumours in children; it is critical to the outcome and to the child's survival. Sometimes in the NHS, in fact too often, surgery is performed too late in the tumour's development, when nothing can be done. We need specific research into how chemical and other changes in tumours develop so that the critical timing of surgery to remove the tumour can be got right. I know that the Minister is listening very carefully and that he will look at that matter. That would be very helpful to all neurosurgeons practising in this specialised and important area of the NHS.

Again, I congratulate my hon. Friend the Member for Buckingham on introducing the debate in such warm and moving terms.

9.43 pm

The Parliamentary Under-Secretary of State for Health (Dr. Stephen Ladyman): It is usual practice to congratulate hon. Members on securing Adjournment debates, but on this occasion that sentiment is more deserved than usual. I had not realised that Parliament had so little considered these matters until the hon. Member for Buckingham (Mr. Bercow) spoke, and I hope that opportunities can be found further to debate them in coming months because they clearly need to be explored. We need to work together on initiatives to move forward. The debate is timely, given that last month was brain tumour awareness month, when a number of charities throughout the UK organised a host of fund-raising and awareness-raising activities. I have no doubt that Ali's Dream and the Ellie Savage Memorial Trust were involved.

My hon. Friend the Member for Waveney (Mr. Blizzard) described, in very moving terms, the experience of his constituent, and the hon. Member for
 
26 Apr 2004 : Column 726
 
Castle Point (Bob Spink) raised issues of great interest. I hope that all the Members who spoke will take it as given that I will ensure that officials study all their comments with care, and that their constructive suggestions will be taken on board.

Before coming to the main part of my speech, let me respond to my hon. Friend the Member for Waveney on how individual charities can engage with debates such as this. If a charity is engaged in developing a project that is of national significance and is related to the priorities of the Department of Health, the Department can provide some funding under a scheme called section 64. Any charity that thinks it has an idea of national significance and is interested in taking that route will find the means to make an application on the Department's website. If the charity is engaged in purely local work, it needs to engage with its local primary care trust—PCTs are responsible for commissioning services in their local area. I would encourage all PCTs to have thorough and constructive discussions with reputable charities that have good ideas, even if at the end of those discussions the PCT might say that it has other means of meeting local needs, or it is not especially interested in the charity's idea. Similarly, I would encourage all charities and lobby groups to take that route.

Cancer in children is mercifully rare: about 1,100 new cases are diagnosed in England each year, of which about one fifth are cancers of the brain and spinal cord. I do not want the hon. Member for Buckingham to take anything I say as being complacent in any way. Of course even one child's death is one too many. However, that said, I should put it on the record that improving the care of children with cancer is one of this country's success stories. I am delighted to be able to say that, according to Cancer Research UK, we now have some of the best children's cancer services in the world. Survival rates for the most common forms of children's cancers match those in the United States, which is regarded as setting the gold standard.

Since the 1960s, there have been great advances in the treatment of most childhood cancers, which have resulted in markedly higher survival rates. Only last month, the Office for National Statistics published a report on children's health, which detailed that a child diagnosed with Hodgkin's disease in the mid-1960s had a 39 per cent. chance of being alive five years later, whereas a child diagnosed with the same disease in the mid-1990s had a 94 per cent. chance. Similarly, survival rates of children diagnosed with acute lymphoid leukaemia—the most common form of cancer in children—have risen from a mere 4 per cent. in the mid-1960s to 81 per cent. in the mid 1990s.

Those improvements in survival rates occurred during a period of great technical advances in childhood cancer treatment, but there were also major changes in the patterns of referral. At one time, most children with cancer were treated at local hospitals; there were few clinicians specialising in paediatric oncology and opportunities to participate in collaborative studies of treatment were limited. Treatment has gradually become more centralised and larger numbers of children have been entered in national and international clinical trials or studies. The hon. Member for Buckingham mentioned the relatively limited number of specialised services available in this country. Although it would be wonderful to have services on everyone's doorstep,
 
26 Apr 2004 : Column 727
 
creating centres of excellence requires the creation of specialised services, which, inconvenient though that might be in some cases, has been a major factor in driving up success rates. All hon. Members should take that success into consideration as we debate hospital reconfiguration and concentrating into centres of excellence.

As a consequence of the improved survival rates, the number of adult survivors of childhood cancer has greatly increased. In 1971, there were about 1,400 adult survivors, compared with almost 15,000 in 2000.

In 1971 only around 1,000 adult survivors were aged over 30, compared with 7,000 in 2000. Although there is a small risk of very late relapse, the great majority of five-year survivors of childhood cancer do appear to be cured, with only a 10 per cent. risk of death from recurrent tumour or a treatment-related effect during the 10 years after diagnosis

That said, I am aware that survival rates for children diagnosed with brain tumours are not as impressive, but significant progress has been made none the less. The Office for National Statistics report showed that a child diagnosed with cancer of the brain and central nervous system back in the 1960s would have a 37 per cent. chance of surviving more than five years. Sixty-eight per cent. of children diagnosed with the same disease in the mid-1990s survive longer than five years. I listened carefully to the comments of the hon. Member for Buckingham, and I am not entirely sure that the figures he gave correspond with the figures that I have just given. I can assure him that the figures I gave are accurate, according to the Office for National Statistics.

In the past 30 years the mortality rate for children with brain tumours has been more than halved—18.3 deaths per million in 1971, compared to 8.9 in 2002—but as the hon. Gentleman said, there is no room for complacency. I assure him we are not complacent. We are committed to building on these major improvements. Research, as the hon. Member for Castle Point and others said, is essential if the burden of cancer is to be reduced as quickly as possible.

Through the National Cancer Research Institute we are changing fundamentally the way cancer research is carried out in the UK. The NCRI draws together major cancer research funding organisations from Government and the charitable and private sectors. For the first time these organisations have come together in a single body to collectively map out research activities and jointly plan for the future.

The NHS plan announced that the Department of Health would provide an additional £20 million per year to establish a national cancer research network. The National Cancer Research Network and the National Translational Cancer Research Network were established as a result. NCRN and NTRAC are helping to ensure that patients, including children, from all parts of the country benefit sooner from new developments in cancer care. Within the NCRN the Department of Health provides specific funding for a specialised research network on paediatric oncology, led by the UK Children's Cancer Study Group. The brain tumour group of the UKCCSG is currently running eight trials.
 
26 Apr 2004 : Column 728
 
In addition, several other trials are under development and a number of recently closed studies are being analysed.

The Department of Health also provides funds for the childhood cancer research group at Oxford university, which maintains the national registry of childhood tumours, the largest population-based childhood cancer registry in the world. Sir Paul Nurse, Nobel prize winner and former chief executive of Cancer Research UK, said:

"In terms of the key successes of cancer research over the last few decades, childhood cancer is undoubtedly one of the jewels in our crown."

One of the key actions in the NHS cancer plan is to ensure that patients with suspected cancer are seen quickly and appropriately. GPs have a crucial role in ensuring that children with suspected cancer are referred for specialist treatment. Referral guidelines for suspected cancer were sent to all GPs in April 2000. The aim of these guidelines, which include a section on children's cancers, is to facilitate appropriate referral between primary and secondary care for patients whom a GP suspects may have cancer. The guidelines should help GPs to identify patients who are most likely to have cancer and will therefore require urgent assessment by a specialist.

In the case raised by the hon. Member for Buckingham, the GP did not suspect cancer and thought that it might be some sort of optical problem. Off hand, I do not know whether the guidelines issued in 2000 would have helped in those circumstances, but I will ensure that officials study the guidelines to see whether they offer any encouragement for the sort of situation that the hon. Gentleman described, by helping GPs to spot such conditions and refer them for specialist advice more quickly. It is hoped that the guidelines will also help GPs to identify patients who are unlikely to have cancer and who may appropriately be observed in a primary care setting, or who may require non-urgent referral to a hospital.

In that way, anxiety can be reduced for patients and their families. The National Institute for Clinical Excellence is currently reviewing the guidelines, and its review is due for publication early next year. Again, I shall make sure that NICE gets a copy of the Official Report of this debate.

Every child with cancer currently receives specialist treatment within one month of their being urgently referred by their GP. Improving patients' experience of care is at the forefront of all our plans for the NHS. To support that aim for cancer care, we have made £6 million available over the next two years for pilots to develop a service delivery model that supports patients as they move between primary, secondary and other specialist care. We envisage that the model will include input from social services, the voluntary sector and patients themselves, and hope that it not only improves patients' experience of care, but reduces avoidable hospital stays.

The distinct needs of children with cancer have been increasingly recognised over recent years, which is why we commissioned NICE to produce service guidance for the NHS on child and adolescent cancers. The guidance will include recommendations on optimal forms of diagnostic services, treatment, support services and
 
26 Apr 2004 : Column 729
 
palliative care. It will also include advice on research, the transition from paediatric to adult services and specialist follow-up services for patients who suffer long-term effects from treatment.

---