HC Deb 30 March 1990 vol 170 cc866-74

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Patnick.]

2.42 pm
Mr. Alfred Morris (Manchester, Wythenshawe)

When Professor Karol Sikora, the consultant oncologist and radiologist, launched the disturbing report "Caring for Cancer" last Friday, he attracted wide public attention for his statement that thousands of people die of preventable cancer in Britain today. As a cancer specialist, he spoke of British hospitals that are more poorly equipped than many in the Third world and strongly criticised "badly organised" services for cancer patients.

This debate is about children who suffer from cancer and the widespread belief that much more could he done not only to improve the health care that they receive but sharply to reduce deaths among them. At present, childhood cancers are the third biggest killers of children aged under 14 in this country.

Shortly before Christmas 1988, a normally happy and boisterous three-year-old was taken to his doctor by his mother, who thought that he looked slightly off-colour and that he had a passing infection from which, with the help of one antibiotic or another, he would soon recover and once again be his happy and normal self. When the family GP examined the child, he found a lump in his abdomen. Tests undertaken later showed it to be a neuroblastoma, which is one of the most dangerous forms of childhood cancer.

Within a week the toddler of whom I speak was fighting for his life. By last March, the happy December child was blind in one eye and looked like a victim of the Ethiopian famine. Despite 80 days of the most intensive form of chemotherapy given to children, and 26 treatments with radiotherapy from the latest linear accelerator, sadly the child died.

About one in 10,000 children are believed to be born with a neuroblastoma which, in 95 per cent. of cases, gives rise to symptoms before the age of five. While in some cases the condition goes into remission of its own accord, only 25 per cent. of British children with it survive; the others are diagnosed too late. Dr. Tom Stuttaford, a former Conservative Member of this House, writing in The Times has said: The grief which parents have to suffer is not made arty lighter by the knowledge that 90 per cent. of these cancers could be detected at a stage when simple surgical treatment would give an 85 per cent. cure rate, but that the screening of babies which uncovers neuroblastomas is not carried out because of the cost. Dr. Stuttaford went on to say that in Japan babies are screened for neuroblastoma, that treatment starts there with far higher prospects of success and that, if we screened here, many children's lives could be saved. Dr. Stuttaford, like everyone else, is concerned most about saving life and the relief of suffering, but he also looked at comparative costs. After comparing the current costs to the NHS of treating cases of neuroblastoma, most of which could be saved if simple surgery replaced the present high-tech treatment, he sought to show that screening also made good sense financially. In a subsequent letter to me, he spoke of the urgent need to press the case for screening. He went on: The screening service has reduced mortality overseas in those areas which have a high incidence of neuroblastomas. There is no reason to suppose that British neuroblastomas would behave differently from foreign neuroblastomas. Not only doctors, but also the bereaved families of children who have died from neuroblastoma say that there are far too many preventable deaths from this scourge. They believe, in the words of a letter I have had from one of the bereaved, that death from neuroblastoma is in mostcases now a preventable tragedy of childhood". To discover where the Secretary of State for Health stood on this vitally important matter—using the word "vitally" in its literal sense—I tabled parliamentary questions asking him, first, how many babies were born with neuroblastoma in each of the last five years for which figures were available, and also how many children died of the condition in the same period. The reply, on 27 November last, was a holding answer from the hon. Member for Kettering (Mr. Freeman), the Under-Secretary of State for Health, as follows: I shall let the right hon. Member have such information as is available as soon as possible. Thus it seemed that no information was immediately available to Ministers and in fact the substantive reply to my question, again from the Under-Secretary of State, was not given until more than two weeks later, on 12 December, when I was told: The latest available data on newly reported cases of childhood neuroblastoma cover the years 1971–80, and indicate that during that period 374 new cases were reported for males aged 0-14 years and 277 cases for females. The reply concluded: The number of deaths from neuroblastoma during this period, or for a later five-year period, could only be determined at disproportionate cost."—[Official Report, 12 December 1989; Vol. 163 c. 631.] So the Department of Health's most up-to-date statistics on the incidence of neuroblastoma are 10 years old and the numbers of children who die, year by year, from this most dangerous form of cancer are unknown to the Government because Ministers think it too costly to collect them.

My concern about the reply of 12 December was widely shared and I sought, in a further parliamentary question, to find out exactly what the Minister's use of the term "disproportionate cost" meant and, in fact, just how much the Government would have to spend to establish the number of more recent child deaths from neuroblastoma.

The Under-Secretary of State's reply to my further question was as follows: Approximately £1,600. The reply went on: National mortality statistics do not routinely identify neuroblastoma as a cause of death, and this figure represents the estimated staff cost of identifying and extracting this information from the death certificates of all children who have died from cancer. The Government do not, therefore, know the number of child victims of neuroblastoma—and are now seen as not wanting to know—because they regard —1,600 as too high a price to pay for finding out. By any reckoning, that is a shaming and shocking admission. The reactions of the families and doctors of children affected were not too difficult to predict. Everyone I have discussed the reply with sees it as scandalous and I hope that the Minister will agree that his Department really must take immediate steps fully to inform itself about both the incidence of neuroblastoma and the number of children who die from the condition.

My other parliamentary questions were about screening and the costs to the NHS of treatment in cases of childhood neuroblastoma. The Government are not persuaded that screening—the cost of which has been independently estimated to be £1.9 million—is justified. They claim to be keeping research and development in this field, at home and abroad, under regular review. As to costs, the hon. Member for Surrey, South-West (Mrs. Bottomley), the Minister of State for Health, again revealing the Department's disturbing lack of definitive information—indeed, wilful ignorance—told me in a parliamentary answer on 27 November last: Comprehensive information on the costs of treatment for this condition is not available, but it has been estimated that in one region these are about £45,000 per case."—[Official Report, 27 November 1989; Vol. 162, c.101.] The grandfather of the three-year-old boy whose case I described earlier told me that he had never consciously heard the word "neuroblastoma" until his grandson was struck down by this condition. He wrote: I was not aware that a simple screening could save perhaps over 90 per cent. of the children affected, at such little cost … Even when time has, to a little extent, faded the pain of seeing my grandson go through the horrors of such violent chemotherapy and radiotherapy, I still believe that funds must be granted. After all, what is £1.9 million, if it is going to save so many young lives, when we are prepared to spend not much less than that to protect badgers or natterjack toads to survive the motorcar? What the child's grandfather did not know when he wrote to me was that, much apart from spending £1.9 million, the Government are refusing even to pay £1,600 to find out the number of victims of childhood neuroblastoma. I hesitate even to think how he and other bereaved relatives will react to that disclosure, of which they are likely to learn for the first time from this debate.

As for people more generally, at least they will need no further confirmation of the truth of Professor Karol Sikora's statement of deep concern last Friday about cancer care in this country. I believe that the general public will see it as being at once wrong headed and inhumane for the Government not to know all the facts about the incidence of neuroblastoma, the number of children who die from the condition and the comparative costs of present treatment and of screening.

The House may recall that I had the honour some years ago, after opening the debate on arrangements for the international year of disabled persons at the United Nations in New York, to chair the world planning group which drafted the charter for disabled people worldwide. The document was presented to heads of Governments all across the world and its aims and principles were received with approval by the Prime Minister at No. 10 Downing street.

The charter's first aim was to maximum the prevention of disability and killer diseases, not because reducing the cost of care is of high importance but because saving lives and preventing human distress is the highest of priorities. With a membership of specialists drawn from the north, south, east and west of the world, the committee that I chaired was unanimously clear that no other aim could ever take precedence over prevention. But prevention here in Britain is put at a discount if, due to hideously false economies, the Government are not aware of easily obtainable facts and when proposals, even for limited screening—such as those put to the Medical Research Council by Dr. Alan Craft, a paediatric oncologist at the Royal Victoria Infirmary in Newcastle-on-Tyne—are seen as scientifically acceptable but still await funding. All that he asks for is a proper and publicly-funded evaluation of the problem, which will cover, in the first place, the whole of Scotland and the northern, Yorkshire, north-west, Mersey and south-west regions of England.

I know that there is more than one view of the Japanese screening programme. It is argued that its design is flawed, that its efficacy is difficult to measure in that Japan has no national system for cancer death registration and that, given due funding, we could achieve scientifically better results here. But among senior specialists in Britian, in whose work we can take pride, I have found only one view of Dr. Craft's proposals, namely, that they are scientifically acceptable and merit urgent approval of the funds necessary to put them into effect. Indeed, his method of investigating is described in a letter that I have had from Dr. John Pritchard, consultant/senior lecturer in paediatric oncology at Great Ormond street, as "spot on".

This being an Adjournment debate, time is at a premium and I want the Minister to have ample opportunity to respond to the plea from families and doctors alike for more purposeful action by the Government to prevent every avoidable death from childhood neuroblastoma. Manifestly the Minister must very urgently now secure up-to-date information on the number of babies born with this condition. Just as clearly, he must accept that it is totally indefensible for the Government to refuse to find out how many children have died from neuroblastomas in the past 10 years and that it was gratuitously hurtful to the bereaved families to say, in his Parliamentary reply to me, that £1,600 is too much for the Department of Health to find for that information.

I ask the Minister also to publish, at a very early date, a report on his Department's "regular review"—to recall the reply to another of my Parliamentary Questions—of research and development in this field at home and abroad"—[Official Report, 27 November 1989; Vol. 162, c. 101.] Why should the outcome of that work stay locked up in the Department of Health when it is work done at public expense and irrefutably of high public importance? How can Members of Parliament, the families of children with neuroblastomas or the doctors who work among them, judge the quality of work that is hidden away from them?

Most of all, there is a compelling case, which I hope the Minister will concede before we conclude this debate, for immediate public funding of the screening programme proposed by Dr. Alan Craft. In the view of bereaved families the need to press ahead with his proposals is not only compelling, but grievously overdue. The central truth here, of course, is that policy making itself is blind if policy makers are not in possession of all obtainable facts. Inexcusably, facts have been available which, for 10 years now, the Government refused to discover on the grounds of cost—minimal cost—and that must now be corrected.

The requests that I am making are not extravagant—nor are they only my requests. They are the very least that the families and doctors of children who have died from neuroblastoma want to see. As well as conceding them unequivocally today, the Minister should also agree to meet representatives of the families and of medical specialists in childhood neuroblastoma to hear their submissions at first hand.

I must warn the Government that the campaign for more official effort to reduce the death toll from childhood neuroblastoma will not go away. It will be vigorously pursued for as long as it takes to satisfy the families of children who have already died—and those of children who are dying now—that nothing which could possibly be done to prevent avoidable further deaths is being left undone.

Finally, I should like to thank Dr. Stuttaford for exciting public interest in the issues at stake, the families who gave me information to inform the parliamentary questions that I tabled, in particular, Colonel John Reid of Thirsk, the Neuroblastoma Society for all its humane work in this area, Professor Judith Chessels of the Institute of Child Health and Dr. Jon Pritchard for writing to me. Among many others, I thank the right hon. Lord Pyrn, a former Leader of the House of Commons who is now active in another place, both for the help that he gave me and for his obviously very genuine concern for the children and their families whose case I now commend to the House.

3 pm

The Parliamentary Under-Secretary of State for Health (Mr. Roger Freeman)

The right hon. Member for Manchester, Wythenshawe (Mr. Morris) is a tough and doughty debater. I greatly respect his position and experience. The House is grateful to him for raising this issue so lucidly. He was a much respected predecessor in my post. Some 16 years ago, he started in my lowly position and then rose to more senior positions in the Government.

I agree that the affliction of neuroblastoma is appalling. It is a childhood cancer. We do not know its causes, but we certainly know the consequences. When the right hon. Gentleman referred to the case of a three-year-old, I thought of my three-year-old daughter, who is fortunately in good health, and I can imagine the appalling tragedy and consequences for the family, let alone the suffering of the poor child. I sympathise with his arguments to draw the attention of the House and the Government to the disease.

I shall give the right hon. Gentleman three assurances. First, during the debate he said that the Department had been unable to answer the detailed question about the number of deaths by following normal governmental procedure. This is the first chance I have had to reflect on that, and no gratuitous offence was intended. I am persuaded by his arguments and I shall instruct officials at the Department of Health to find the figures by searching through the death certificates of children who have died from cancer and to ascertain the most current information about those who have suffered from the disease. That will be at exceptional cost, but the right hon. Gentleman's arguments merit exceptional treatment. I hope that he will accept that assurance in the spirit in which it is offered. I shall be in touch with him about how we can inform the House.

Secondly, the application for research to which the right hon. Gentleman referred is being examined by the Medical Research Council. The case still needs to be argued on its merits and I do not believe that justification is as simple as the right hon. Gentleman suggests. I assure him that the application will be properly studied on its merits and will be considered in competition with other elements of vital research. Thirdly, I am happy to meet him and representatives of parents whose children have suffered. That is the least I can do.

Some parents feel strongly that a mass screening programme is the answer. The aim would be to detect the disease at an early stage,—for example six months, when treatment offers the best hope of success. In fairness to them and their children, we must be reasonably certain that such a programme wouldbe soundly and scientifically based and above all, that it would save lives.

To establish the effectiveness of screening would require either research, or comparison with the experience of other countries, or both. I understand that the Medical Research Council has received an application for the funding of a large-scale trial of a technique based on testing the urine of babies at about six months of age. It is considering, in consultation with my Department, what support may be available from public funds.

I cannot tell the House today what the outcome may be. It is a detailed, complex and costly proposal, which must be examined on its merits and in relation to many other vital research priorities. I can, however, assure the House that the concerns expressed are well understood and will be taken into account in that process. We are grateful to the right hon. Gentleman for raising the issue and causing attention to be focused on it. In the remaining time I believe that it would be helpful if I set out the background against which a decision must be reached.

First, we must consider the scale of the problem. It is, of course, immense for every individual affected, but the likelihood of it happening is extremely slight. The recent average for the number of children diagnosed with neuroblastoma in Great Britain is 73 a year. That is approximately one for every 10,000 live births and represents 5.7 per cent. of all cases of childhood cancer. From 1979 to 1988 an average of 44 children a year have died from the disease, or about one for every 16,000 live births. Twenty-four per cent. of children are diagnosed at under one year of age and 75 per cent. at under five years. Where children are picked up with the disease at under a year old, or with the disease in its early stages, they have a good chance of survival. The outlook, however, is poorer for those aged more than one year or with more advanced disease. Even so, the latest available figure for annual deaths from neuroblastoma is about 40 per cent. less than what it averaged from 1953 to 1975.

As we understand it, the situation is getting a little better. Moreover, the proportion of children who are surviving for five years after diagnosis has steadily increased from 15 per cent. for those diagnosed in 1971 to 1973 to 43 per cent. for those diagnosed in 1983 to 1985. That strongly suggests that, overall, treatment is becoming more effective.

Since the 1970s there has been a tendency to concentrate expertise in the treatment of childhood cancers in specialist centres and there is come evidence that that, in itself, has an impact on survival and quality of life. At the same time it must be noted that the long-term side-effects of aggressive treatment in childhood—chemotherapy—may take 15 to 20 years to show up. The potential benefit of early detection and gentler treatment, which is less likely to have such side-effects, must be acknowledged. A difficult judgment must be reached on whether the reduction in mortality and morbidity expected from screening is likely to be significantly greater than that produced by continuing improvements in treatment.

Secondly, evidence from abroad, notably Japan, must be weighted. The Japanese authorities introduced a national screening programme in 1985, based on the experience of two regional schemes which were already running. It is too soon to assess the impact of the national programme, but evidence from the regional schemes has not so far demonstrated a reduction in mortality as a result of screening. Nor is there as yet any evidence of a reduction in the number of children first diagnosed after one year of age and with advanced disease—that is, those at greatest risk, for whom early detection should offer the most benefit. So no evidence has yet been produced that the Japanese are catching the disease earlier, perhaps because screening at an early fixed time misses those who suffer affliction later. On the other hand, a research trial proposed for this country would require a period of five or six years to run, and a similar period to follow up all the babies screened. So, another judgment must be reached, on whether conclusive results are likely to become available from Japan, or elsewhere, more quickly than from the United Kingdom.

Thirdly, as with other screening schemes, there are potential pitfalls and uncertainties that must be addressed. For instance, at certain stages of its development, which may be early or late, neuroblastoma can clear up spontaneously. There is evidence that the number of such cases may be up to 40 times greater than the number of cases diagnosed in the normal way, when a child comes to a doctor with symptoms. As a result of autopsies or post mortems we believe that cases can go undetected, which are clearly malignant. Screening will detect cases that would not otherwise have come to light, and that means that children could be subjected to unnecessary investigation and treatment. That could result in distress for them and uncertainty for their families, and it would not have the slightest effect on the toll of mortality from this disease. Where, on the other hand, screening detects advanced disease, there is no reason to suppose that treatment would be any more successful than if the child had been diagnosed in the normal way and had presented for treatment. Again, there would be no effect on mortality.

Even more crucial, perhaps, is the question of misleading results—false positives and false negatives. If a child is screened positively as having neuroblastoma and turns out not to have it, the potential for distress and uncertainty for him and his family is clear. If a child is screened as free of the disease and subsequently turns out to have it, that potential is tragically magnified. Those are not hypothetical examples. There is some evidence to suggest that children will develop neuroblastoma at the age of one year or more, which could not have been detected by a urine test at six months.

A small-scale pilot screening service in Tyneside has already successfully identified two cases of neuroblastoma from a population of just over 22,000 babies, but it has also produced both false positives and false negatives. A judgment has therefore also to be reached on the extent to which a large-scale trial is likely to replicate those results—and to pick up the cases that would have cleared up spontaneously—and whether national screening is an acceptable price to pay for detecting those cases, which will in fact become lethal at a stage when they are more likely to respond to treatment.

Fourthly, a judgment must be reached on the understandable pressures that the proposed research will create. I gather that the test used has so far proved simple to administer and acceptable to parents and health professionals. If the test proved effective in reducing mortality, the potential gain in terms of high-quality years of life saved could be enormous. It is precisely to establish conclusively what difference screening makes that a major trial has been proposed. Because the disease is comparatively rare, this would need to involve the monitoring and follow-up of very large groups of infants, both screened and unscreened, over a number of years.

During that period, there would be pressure to extend screening to all babies, whether or not it eventually proved to be of measurable value. That would be entirely understandable—the test offers hope—but it would flaw the scientific basis of the trial. It would be quite wrong to create the expectation that an untested procedure will be made universally available as a routine service.

Any prospect of reducing the toll of suffering and death from childhood cancer deserves the most serious consideration. That consideration is now in hand in relation to neuroblastoma. I emphasise that a decision has yet to be made and that the factors that I have mentioned and the views expressed by the right hon. Gentleman will play an important part in reaching it. I hope that he will welcome my assurances and pass them on to those whom he represents.

Question put and agreed to.

Adjourned accordingly at twelve minutes past Three o'clock.