§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Legh.]
§ 4.1 p.m.
§ Mrs. Joyce Butler (Wood Green)May I say, at the outset, that the rather formidable phrase, ventricular septal defects, covers a particular type of "hole-in-the-heart" from which a number of children are suffering. It must not be confused with the auricular type of hole in the heart, to which most of the publicity has been given, and a number of cases which have been mentioned in the Press, giving the impression that all types of hole-in-the-heart operation are taking place in this country. It is true that they are taking place for the auricular type, but not, it would appear, in the cases where the ventricles are affected. The operation for this latter defect, as well as in the other cases, is particularly difficult, and a very complicated machine is necessary to by-pass the heart during the period of the operation.
The number of children suffering from this type of defect is not available, but in the course of discussing the case of a child in my constituency I have encountered five other cases of children who have suffered, or are suffering, from this type of defect.
800 A child who has this defect is not able to lead a normal life. Very quickly the heart difficulties strain other organs, particularly the lungs, and the child can keep going only by constantly taking drugs. There is always the susceptibility to bronchial pneumonia, and whenever this occurs—and it occurs frequently—it puts the child's life in imminent danger. The operation can take place only at a certain age and I understand that if it is left too long the operation cannot then be performed successfully.
All this, of course, imposes a great strain on the parents of the child. They watch its development most anxiously and they are very concerned that the operation which will enable the child to live a normal life should take place at the earliest possible moment.
Of the six cases to which my attention has been drawn, one child died while it was awaiting the operation; in a second case, the girl, aged 9, is now too old to have the operation; and a third case is one to which some publicity has been given—that of Johnny Gold, who went to America to have the operation.
He went there because, at that time —and I think that it is still the position—his parents were told that the operation could not be performed here on children under the age of two. He was then eighteen months old. The operation was performed successfully in America and he is now leading a normal life, but he was told at the Mayo Clinic, in America, that had the operation been left for another six months it would have been too late.
The fourth case is in my own constituency, and concerns Steven Smith who will be five in April. Steven's parents have been told that the operation can be performed in this country after Easter. They have to decide whether to have him operated on here, or to try to make arrangements for it to be done in America. Theirs is the decision, but what I want to stress this afternoon is the importance of giving adequate information to such parents as this as to the chances of a successful operation in Great Britain so that they can decide which is the better course for them to take.
Parents in this position, naturally, want to do what is best for the child, whatever sacrifices may be involved. They 801 want to feel that they have given the child every possible chance. They know that the Mayo Clinic has been performing these operations for a number of years—I understand that three operations a week are being performed there, with 80 per cent. of success—and they can see at home here a child who had the operation successfully performed in America.
In Britain, parents find it very difficult to get any information at all. Some has been obtained by Questions to the Minister of Health, a little has been obtained by representatives of the Press, and a little by parents, but it is not really sufficient to enable parents to weigh up the chances of an operation here as against sending the child to America.
There are, of course, great disadvantages in taking the child to America. It means a large expense. Even if the money is obtained by contributions of generous friends and well-wishers, it does not completely cover all the loss. The parents have to suffer loss of income while the father is out of the country and away from his job, and so on.
Another case is that of Peter White. He is just two years old, and I understand that his parents have been told that he cannot be operated on in this country. Remembering the experience of Johnny Gold, they are, naturally, very anxious to know whether, at an early date, it will be possible for children as young as this to be operated on here. At present, their only hope of having the operation performed in time would seem to be to take the boy to America. There is another case where, again, the parents are in the dilemma of having to make up their mind as to the right course.
I might say, in passing, that in the case of Steven Smith, an offer has also been made to the parents by representatives of the Soviet Union to have the operation performed there.
It would appear from a Written Answer by the Minister of Health that we have 15 centres at which the equipment is, or will shortly become, available for performing this operation. At four centres, the operation has already been performed with this equipment. But it still is not clear to me whether or not the operation is the operation for the closure of the 802 ventricular defect, or whether any operations which have been performed have been successful, which is, obviously, a very important point.
I should like to ask the Parliamentary Secretary to the Ministry of Health certain questions which, I hope, he will be able to answer, because if he can it will enable parents concerned and others who may be in the same position to make up their minds what is the best course to follow. This must be a recurring problem. This group of children now between the ages of two and nine is just one group here and now; but there must be children constantly being born with the same defect and children for whom the problem will soon become acute.
I should like to know whether the Parliamentary Secretary can say how many operations have actually been performed in this country on young children. I was not able to get a reply from the Minister on that point, but I would be grateful if it is possible to have an answer now. Also, can the hon. Gentleman say at which hospital such operations have been performed, and can he tell us the age of the children on whom the operations were performed? Have any children under the age of five, for example, had the operation in this country, and could he say what proportion of successes there has been? If he cannot give the proportion could he give the number of successes? Obviously, there is an important difference there, and for medical reasons he may find it easier to give the number of successes rather than the proportion.
I should be grateful if the hon. Gentleman would say what type of machine has been used for these operations. This is a matter of some importance, because the information that I have suggests that the machine available in this country is only able to by-pass the heart for six to seven minutes—at the very most, nine minutes—whereas in the Johnny Gold operation at the Mayo Clinic the heart was by-passed for 25 minutes. The younger the child and the more complicated the operation, the longer the period is necessary for the machine to by-pass the heart while the operation is being performed.
Then for the children under two, and where the operation is necessary for these 803 very young children, since it cannot be performed in this country and it is a matter of urgency that it should be performed, is there any provision by which the Health Service could meet any part of the cost of taking the child to the United States, or to some other country where the operation can be performed successfully? Is it possible to bring into this country the Gibbon type of machine, which is in use in America, for a limited time, possibly until the British machine is perfected and is able to deal with cases of this kind?
I appreciate that all this is expensive and possibly outside the normal range of the activities of the Health Service. Only a very few children may be affected, but it seems to me that if it can save the life of only one child it is important that this kind of possibility should be considered.
There are two other points which I should like to make for myself. These other points which I have made are in an endeavour to get information which would be helpful to parents. Is the difficulty in obtaining a machine which can deal with the operations on very young children, the under-twos when necessary, influenced in any way by a lack of finance? Also, would it be possible, or is it proposed, to devote, let us say, one or, at the most, two hospital centres to this particular type of operation, so that the team may benefit from the experience of previous operations? It seems to me that 15 centres in a country like ours is a very large number, when the number of operations required is unknown, the equipment is so expensive, and the operation itself so complicated.
The Parliamentary Secretary knows about some of these questions I have put; others, I am afraid, I have rather sprung on him. I hope that he will give me answers now to those on which he has the information and that he will give me a reply to any others as soon as possible. I hope that he will try to make it possible to give the kind of information I have asked for to parents who are in this dilemma, or, if it is not possible to give it direct to them, to give it to their general practitioners, so that they may have the fullest possible advice before taking what is, for all of 804 them, an extremely grave decision in the interests of the lives of their children.
§ 4.16 p.m.
§ The Parliamentary Secretary to the Ministry of Health (Mr. Richard Thompson)I am very grateful to the hon. Lady the Member for Wood Green (Mrs. Butler) for raising this matter today. As she rightly says, it directly affects only a small number of children, but that does not detract from its importance, and it may be possible for me to give her a little more information in this kind of debate than it is possible to give in the ordinary process of Question and Answer.
As I believe the hon. Lady knows, the operation we are talking about consists of closure of a congenital opening between the right and left ventricles. The condition is often referred to as a "hole in the heart," although, of course, it is not the only condition which can be so described. Some of these operations on the open heart can be done under hypothermia, which is cooling to a very low temperature, but those lasting more than 10 minutes—the hon. Lady is speaking of those, I think—including those for repair of inter-ventricular defects, can be done only if some form of artificial circulation can be provided, and a number of heart-lung machines have been developed for this purpose.
Of course, the successful performance of this kind of operation, using one of these machines, requires a highly skilled and trained team, consisting, in addition to the surgeon and anaesthetists, of doctors and technicians with long practice in using the complicated apparatus. The operation is to be distinguished from other forms of heart surgery and, in particular, from the repair of openings between the auricles.
The technique of hypothermia has been so far developed in this country that it is considered preferable, where maintenance of the circulation is a problem. Hypothermia involves cooling the patient so as to slow down his body processes and permit temporary stoppage of circulation without serious damage. The results obtained by this method have been so successful, compared with the risks inherent in the heart-lung machine—which, of course, is what the hon. Lady is speaking about—that it seems unlikely that the machine will be necessary for 805 this kind of operation here, or will be used save in special cases, unless it is greatly improved.
I will say a word or two now about the condition for which the operation is required. Inter-ventricular septal defects occur in varying degrees of severity. The mildest cause little disability. Some are associated with more serious defects, which may or may not be amenable to surgery, and the most serious are, of themselves, incompatible with prolonged survival. It follows, then, that the need for the operation, as the hon. Lady rightly says, will occur most often in children. Below the age of two, when the most serious defects may already threaten life, the risks attendant upon the operation are at their maximum.
Some of the defects often associated with intra-ventricular septal defects can be treated surgically under hypothermia, and repair of the septal defects may then be unnecessary. We have at present no means of assessing the precise need for the operation in this country. I was interested to hear that six cases had come to the hon. Lady's notice, but we have not any statistical information about that matter. We know that about three to four babies per thousand live births have congenital heart disease, and that two per thousand survive infancy. How many of these have operable ventricular septal defects it is impossible to say.
The hon. Lady was very much concerned with the facilities that exist for the operation in this country. I shall say a word about the machines which are available. There are three types in use, two American machines, the Gibbon, which she mentioned, and the Lillehei, and one British machine, the Melrose. The Melrose machine is also in use in the United States as well as Great Britain, and the Lillehei machine is available here as well as in the States. No one type can be said to be superior, although it is true that the Gibbon is the most costly.
One of the specific questions that the hon. Lady asked me was whether a Gibbon machine could be made available here. I am glad to tell her that one is on order for a centre here. It is not, therefore, a question of a financial bar on the importation of a machine of this kind. Research into and development of these machines is going on, but 806 the machines of which I have given the names are the only ones in use.
In her Question on 10th February, the hon. Lady asked at which centres equipment was available, and she was given a list of hospitals. Of the 13 in the list, as she rightly says, the operation has been performed so far at only four of them. Those four are Guy's, the Westminster Hospital, the Bristol Royal Infirmary and the Royal Liverpool Children's Hospital. We do not know how many operations have been carried out, but the number is certainly small, since the technique of the artificial circulation is new and there has been little opportunity at most places for the necessary teams to acquire the requisite degree of experience in its use, because so many of the patients for whom the artificial circulation could be used can be treated by using the safer technique, in British hands, of hypothermia.
It is known that much greater experience has been acquired in the United States where hypothermia is less commonly used. This is largely because the heart lung machine is used there for inter-atrial defects as well, and, of course, the much larger population throws up more cases. Medical opinion here favours hypothermia and a different surgical approach to the less serious cases, while American surgeons use the heart lung machine on some of these cases and have acquired wider experience with it.
The hon. Lady, however, can be assured that intensive study is being given to the heart lung machine at various centres here and its use will be developed as fast as surgeons feel the prospects of success justify. Even now it is not true to say that any child needing the operation—and I would include a child two years of age—must be taken to the United States.
The hon. Lady quoted one or two individual cases, in particular the case of Steven Smith, who was offered an operation here. I am not clear whether his parents intend to avail themselves of the offer or not. Presumably, they are weighing in their minds what opinion they have formed of the chances of the operation being performed successfully here and of going over to the United States. In a matter of that kind, I cannot stress too strongly that they can be guided only by medical opinion. I from 807 this Box can say what facilities are available, but I could not possibly presume to advise in a detailed matter of that kind.
The hon. Lady asked a number of questions involving statistics—the number of operations, at which hospitals they were performed, how many had been successful, the number of children under the age of five, the percentage of successes and matters of that kind. We have not collected statistics on the number of defects closed—successful operations—but we do know that some have been successfully closed in young children in this country and other operations have been used successfully in many more cases. The reason why we do not have these figures at our fingertips is that the hospitals are under no obligation to provide this kind of material to us. I will certainly look into the matter and see whether we can get any more complete information, but it is not something on which a body of knowledge is building up all the time as in the case of notifiable diseases.
I would not accept what the hon. Lady felt might be the case that only the machine in use at the Mayo Clinic was suitable for the operation in the case of children under two years of age. That is not my advice in this matter. Ultimately, as I have said, parents should consult their family doctors about these matters and also about any offers from other countries for the performance of the operation. They in turn will, no doubt, bring in cardiologists, who will be familiar with the facilities that are avail- 808 able here and will give the best possible advice in all the circumstances.
It only remains for me to say that the research to which I have referred is going on actively in this country and that as experience is built up in dealing with these cases, it will become available to the public. I would not take the view that we are unable with our facilities to do here what we know is done in the United States. I repeat, however, that the final decision in any individual case must be obviously for the doctor. It should be recognised that in some cases an operation cannot be justified and there is a real risk of the children making fruitless journeys abroad. As I have said, however, the final decision must be for the doctor.
The final point asked by the hon. Lady was whether in a case when the parents decide to take a child abroad, help could be provided in the payment of fares and the like. I regret that we cannot assist in that way. We are bound by the provisions of the National Health Service Act, which does not allow us to contribute to fares for people taking their treatment overseas.
I hope I have been able to give the hon. Lady some enlightenment on this subject. I have taken careful note of the various points which I was not able fully to answer. We are all grateful to her for raising this important topic at this time.
§ Question put and agreed to.
§ Adjourned accordingly at twenty-nine minutes past Four o'clock.