§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Tinn.]
§ 10.0 p.m.
§ Mr. Patrick Cormack (Staffordshire, South-West)I am delighted to have this opportunity, particularly after our last debate, of raising an important constituency case but in such a way that I hope it will help to illustrate a real national problem. I thank the Minister for being here because everything I say will be entirely pertinent to his role—and there will be nothing, I hope, that he will take as being critical of it. His own reputation in these matters is deservedly high. I do not seek to raise the case of Tonya Simpson in anything like a partisan spirit.
What I have to tell the House is a sad but inspiring story of a very brave little child, of two courageous parents and of some dedicated and determined doctors. To look at Tonya Simpson—many people have had the opportunity to do that because of the television coverage of this case—one would think that she was an ordinary happy child. Indeed, to some degree, so she is.
However, this apparently normal happy child was born with spina bifida, she developed hydrocephalus, and she was written off by many people. It is only thanks to the devotion of her parents and the skill and dedication, of the doctors who cared for her in Birmingham that she is alive today. Above all, it is due to her own indomitable pluck. I have never met or heard of a child with more courage. Unfortunately, in seeking to arrest the hydrocephalus—after a successful series of operations—her kidneys were badly damaged. She now suffers from chronic renal failure. So although she is not highly intelligent—one would not pretend that—she is an ordinary, bright, cheerful child who enjoys life but who faces death.
Tonya's parents came to see me not only because they were naturally concerned about her but because they were more concerned, in a sense, for others and hoped that in her case a national problem could be highlighted.
Considering all those who have chronic renal failure, especially children and even 794 more especially handicapped children, one comes into contact with deep human problems. In coming to me, the parents of this girl showed great public spirit, because they know, as I know, that, whatever the Minister may say tonight, Tonya's life is at risk even as I speak.
As the consultant paediatrician who has looked after Tonya with such skill put it in a letter to me recently, her condition could suddently deteriorate
as a result of intercurrent infection or an uncontrolled rise of blood pressure";or, as Tonya's mother put it in much more graphic and heartfelt words,It's like living with a time bomb. She might die at any moment.My plea to the Minister is essentially simple: if Tonya cannot be saved—I hope to God that she can—then at least let us make sure that she does not die in vain.The tragedy is that as things stand she will die, just like 22 other people in the Birmingham area alone over the last five years. The stark fact is that, during the next year, over 2,000 people—not counting those who are under five or over 60—will develop renal failure and that of those at least 100 will be children over five. Approximately 45 per cent. of those children, but only 33 per cent. in the West Midlands area, will be dialysed. Most of the rest will have been entered on the waiting list for death, in spite of the fact that almost all could have their lives prolonged, perhaps indefinitely, if there were sufficient dialysis and transplant facilities.
The supreme tragedy is that it is not a question of there not being human skill available to deal with this problem. Doctors know how to treat these patients, but they cannot exploit that knowledge. Instead, they have to face the cruel dilemma—there can be none crueller—of deciding who shall profit from their skill and who shall not.
Tonya's doctor explained the dilemma in a letter I received about a week ago. He said:
Because of the physical handicap associated with her spina bifida (she walks on crutches) and her mild mental sub-normality, she has not achieved a high priority rating amongst other patients, child and adult, queuing up for our extremely limited dialysis facilities.795 The fact that Tonya walks at all, be it on crutches, and attends a normal school, is supreme testimony both to her courage and to the courage of her parents.The doctor added:
The real point is that she has as much right to what doctors would regard as the proper treatment for chronic renal failure as any other patient.I do not think that any hon. Member would dispute those words. The doctor, whose letter I found one of the most moving I have ever received, underlined the tragic irony of it all when he said:The whole problem would be eased by having more dialysis facilities for one can maintain life more or less indefinitely with something like a 90 per cent. success rate by means of dialysis, and this can be used as a 'holding operation' until such time as a suitable kidney becomes available.The need for more dialysis facilities has been accepted by this Government, just as they have rightly accepted the need for promoting the kidney donor scheme.In a relatively brief debate such as an Adjournment debate, I do not want to rehearse again all the arguments that the hon. Member for West Lothian (Mr. Dalyell) and others have advanced with such skill in recent months. I am delighted and honoured to see the hon. Member for Eccles (Mr. Carter-Jones) here, because I know that he takes a personal interest in these matters. I do not want to repeat the arguments, although I shall refer briefly to this aspect later. I want to state a few simple and frightening facts of which the House should be aware and of which I am sure the Minister is aware. I am confident that he is as anxious as I am that the facts should be set out and should be correct.
Britain is, regrettably, very low down in the league table when it comes to treating patients with chronic renal failure. This is sad in more ways than one, because where we pioneered we are now following. Others are taking the lead. We are approximately thirteenth in the so-called league table of European nations. The mark of our own failure was brought out graphically in a recent letter to The Times which was sent by the head nurse of a renal unit in Brussels. In that letter this head nurse made these comments:
It is appalling to think that whereas everyone without exception has a right to a machine 796 in Belgium, in a country such as Great Britain, whose National Health Service has been a source of inspiration and an object of envy of so many countries, there are not enough machines available, with the result that the number of deaths due to kidney failure is higher than in the majority of neighbouring European countries. In Belgium, there are almost twice as many dialysis patients per million head of population as in Great Britain.Those are sobering thoughts.Another fact that I bring before the House is that in the West Midlands, a populous region with the great city of Birmingham as its heart, we are fourth from the bottom of our national league table in terms of the provision of dialysis facilities. What all this amounts to is that for a child to develop chronic renal failure today is as desperate as it was to get smallpox before Jenner and as tragic as it was to get smallpox after Jenner without having the benefit of the vaccination which he pioneered. For the handicapped child the situation is worse than ever.
I make these remarks in no spirit of recrimination or bitterness. This is no party issue. I hope and believe that the Minister and I are at one. I am not making any criticisms of this Government in any party sense. What I am saying is that it is tragic that a service which was, and in some ways still is, the envy of the world, should be in this situation. It is incompatible with the idea of a National Health Service that we should have to tolerate a situation in which little children are not even entered into the survival statistics and where doctors are forced to spend agonising hours trying to decide who shall live and who shall die.
I quote again from the letter written by Tonya's consultant:
I can assure you it is a most invidious task.He is referring to the task of choosing who will live.Who is so elevated as to say without any sense of guilt that to treat a 55-year-old man with cancer of the lung is any more deserving than a 10-year-old child with chronic renal failure? The facts show that the results of chronic renal failure treatments are better than those of most cancer treatments, but surely our society which can afford so much money to bolster up ailing industries ought to be able to provide a better standard of health service. In other words, we should not have to he faced with these difficult decisions if more cash were available.There are two points which are particularly worthy of emphasis there. First, 797 there is the fact that dialysis and transplant treatments have a better chance of success than many other treatments, especially those for cancer. The second point worthy of emphasis—and here I draw upon figures produced by the European Dialysis and Transplant Association—is that it is within the 10 to 20-year-old age group that the best candidates for successful transplants are to be found.What do I suggest should be done? What do I hope to hear from the Minister tonight? First, I should like his assurance that the dialysis unit at the East Birmingham Hospital, for which the local Lions Club has worked so hard and raised well over £50,000, will now be built. It is already more than 18 months overdue. That is not the Minister's personal fault but he must regret it as much as I do. It must be built to keep faith with those who gave.
I hope that the Minister will feel that he can point to that example of local fund raising throughout the country. He might even wonder, with his own splendid reputation in these matters, whether it is worth while creating something on a par with the Queen's Award for Industry for organisations such as the Lions, who do so much for others and raise such magnificent and enormous sums. So I hope that he will encourage, promise and reassure in that context.
But beyond that I want the Minister to talk to the Secretary of State and the Chancellor of the Exchequer so that money can be found. I suggest that it does not necessarily all have to be new money. I suggest that we might have a critical look at the money spent on administration and on drugs within the NHS. Not sufficient doctors are cost conscious when writing out voluminous prescriptions. It may well be that some money could be found within the existing budget for the sort of facilities for which I am pleading.
I also ask that the money recently provided for units could perhaps be used a little more flexibly than the Chancellor originally promised, so that those areas which need more staff rather than more machines can use it in that direction. I suggest also that perhaps the Under-Secretary of State could take up the suggestion by Lord Segal in another place, bearing in mind that the noble 798 Lord is a member of the Labour Party and a doctor of great experience, and perhaps commend to the Chancellor that he should allow people who give their kidneys to offset, as Lord Segal suggested, £20,000 and not have it subject to capital transfer tax. It might be an incentive to people to do something.
I know that the Minister does not have authority to commit the Government to some of these things, but he has the opportunity to advocate them. Governments can act. When Ronan Point collapsed, new building regulations were brought in which, in effect, valued a human life at £20 million. I think Tonya's life is worth quite a lot, and I think that things along these lines could well be done. I think that the hon. Gentleman has the public on his side—
§ The Under-Secretary of State for Health and Social Security (Mr. Alfred Morris)I hope that there will be the possibility of giving a full and considered reply to the speech of the hon. Member for Staffordshire, South-West (Mr. Cormack) in the half hour that has been allocated for the debate.
§ Mr. CormackI am coming to a close.
The hon. Gentleman has the public on his side. Only today I had a moving letter from an ex-guardsman injured in Aden offering to give his kidney to Tonya. That is an offer that, unfortunately, it is not practical to accept for all sorts of reasons. I feel confident that the hon. Gentleman will agree with me that the situation is wholly unacceptable, and that it is totally wrong that a mother of a young child should have to say:
There is a shortage of staff as well as equipment. I can't even be trained to operate a machine yet.If the hon. Gentleman agrees, and does just some of these things, and just one extra life is saved in the next year, this debate will not have been in vain, even if Tonya Simpson does not live to read about it; but I hope and pray that she will.
§ 10.19 p.m.
§ The Under-Secretary of State for Health and Social Security (Mr. Alfred Morris)I am most grateful to the hon. Member for Staffordshire, South-West (Mr. Cormack) both for the manner and 799 the content of the speech with which he has opened this debate. I entirely understand his concern and welcome the opportunity he has given me to outline the steps my Department is taking to increase facilities for paediatric dialysis and kidney transplants.
The hon. Member has drawn attention to the specific case of Tonya Simpson. She is now 10 years old and was born with spina bifida. She subsequently developed hydrocephalus, and operations were undertaken to arrest this condition. Unfortunately, however, the combination of infection and other problems led to renal damage. I understand that Tonya's condition is now stable and that she is not thought to be in any immediate danger, though eventual progression is virtually certain. It is always tragic when a child develops a life-threatening condition such as renal failure. The tragedy is not only for the child, but for the parents and family as a whole. Yet it is even more tragic when the child, as in Tonya's case, already suffers from other handicaps. The support and sympathy required by the family are then very much greater. In recent years, there has been much progress in helping disabled children to triumph over many of the handicaps which are imposed by their disabilities. As the House knows, I regard it as deeply important that we should give all possible help to the disabled, and not least to disabled children.
It is gratifying that recent medical progress has made the prospect of successful treatment of children by haemodialysis so much brighter, and that the number of successful transplants has increased. There is still need to expand both forms of treatment, however, and I shall be indicating the initiatives we have been taking to promote further advance.
Many factors influence the likely success of treatment either by dialysis or by transplant, hence the selection of patients. I am advised that the more additional disabilities or illnesses from which a patient suffers, the more difficult it is to carry out either form of treatment successfully. The difficult problem of selection of patients likely to respond to treatment is the task of the consultant who is responsbile for the treatment. It is a daunting and very onerous task which I am sure consultants carry out 800 with every sympathy for the patient and for the family. It is not a task I envy them.
Tonya was seen by a consultant transplant surgeon in December 1977. He was of the opinion that, because of the small size of her blood vessels, and for other medical reasons, she would be unsuitable for long-term haemodialysis. The prospects of a transplant helping her were considered to be poor because of the risk of infection, and also because the transplanted kidney would eventually fail from the effects of the underlying condition which is causing Tonya's own kidneys to fail. Nevertheless, since it seems probable that a kidney transplant may at some time need to be considered, she has now been placed on the waiting list for a transplant operation at the Queen Elizabeth Hospital, Birmingham. Here I must emphasise that Tonya has not been fully assessed for dialysis because of the present stable nature of her condition and her other medical problems.
I am advised that discussions are currently being held between the West Midlands Regional Health Authority and the Birmingham Health Authority (Teaching) on the expansion of the transplant unit at the Queen Elizabeth Hospital, so that the numbers of transplant operations can be substantially increased.
Moreover, a special new paediatric dialysis unit is being provided at the East Birmingham Hospital. It should be ready by the middle of next year. Until then, as a temporary measure, paediatric dialysis cases can be referred to one of the five dialysis units in the West Midlands Region or to paediatric units elsewhere in the country. It may be of interest to the hon. Gentleman also to know that plans are being considered by the regional health authority to expand, in the early 1980s, three of the adult dialysis units in the region.
Naturally, I have deep sympathy with Tonya and her parents. I am assured that, should her condition deteriorate, a full and urgent assessment will be made of her suitability for dialysis or transplant. She will in any case be considered for the new paediatric unit in Birmingham when it opens. Tonya is, and will continue to be, in the care of a consultant paediatrician, and he will be seeing her again next month.
801 The question of children awaiting kidney transplant operations is one that is given a great deal of attention by my Department. It is estimated that about 80 children a year in the United Kingdom develop chronic renal failure in treatable form. In 1977, 39 such children were accepted for treatment by haemodialysis and/or transplant operations. The remaining children inevitably died. This was a waste of human life which caused my right hon. Friend very great concern, and in the last year he has announced several important measures aimed at improving the availability of treatment for patients with renal failure, and especially for child patients.
The treatment of children by haemodialysis is a highly specialised form of treatment. It presents special problems for the clinician and requires the availability of specialised skills in the team caring for the children.
My Department provided funds for the pioneering work done in this field at Guy's Hospital and the Royal Free Hospital. The successful studies there demonstrated the desirability of developing this work in special units, and the most pressing need seemed to be to develop additional centres outside London.
In view of the very small number of patients involved and the highly specialised skills required, my Department accepted the advice of the British Association of Paediatric Nephrology that paediatric dialysis facilities should be concentrated in eight units in England, including the one to be opened at Birmingham next year. The aim is that each unit will inevitably accept a degree of commitment beyond the region in which it is situated.
In order to assist regional health authorities in developing these units more quickly than might otherwise have been possible, in July of last year my Department wrote to the regions to say that £270,000 was being made available from the limited central funds reserved for special medical developments. We announced that the money was to meet, first, the capital cost of four additional machines to be used for child patients at each of six units outside London, and, secondly, to meet the first year running costs of a corresponding number of places on the home dialysis programme.
802 I am pleased to say that five of the six health authorities we expected to take up these funds, including the West Midlands, have indicated their intention of doing so. Proposals from two other regions are being considered. In addition, the recent consultative document on priorities for health and personal social services entitled "The Way Forward" has urged that there should be more paediatric dialysis provision. Children will undoubtedly benefit also from the rapid expansion in services envisaged by the Budget announcement of an extra £3½million for dialysis services, and from the £1 million recently made available for establishing several minimal care dialysis units.
Children on dialysis who are awaiting transplants face many problems. They have to adjust to the need to spend long and boring hours on a kidney machine, which must be even more irksome for children than adults. The growth of the children may be retarded and, in many cases, there is the need to travel long distances for hospital treatment. When the child dialyses at home, as many do, strain is placed on the parents and siblings, whose life together as a family becomes restricted. Tensions can quickly result. Yet despite these problems many children cope with dialysis very successfully and over 65 per cent. of those on home dialysis have a satisfactory school attendance. For most of the children, however, the ideal solution is a kidney transplant.
Although for a child the transplantation of a kidney is a more specialised operation than for an adult, recent results suggest an improving prognosis from transplantation. Increasing numbers of children are able to enjoy life, return to full-time education and have reasonably normal growth patterns. Unlike dialysis, there is no general shortage of facilities for carrying out transplants, but, as the House knows from the many announcements we have made, there is still a serious shortage of donor kidneys for transplant and not only for children but for adults.
In 1977, there were 706 transplants using cadaver kidneys in the United Kingdom. This was an encouraging increase of some 22 per cent. over the previous year. Yet the list of patients waiting for transplant is still over 1,100. 803 The rate of transplantation in the United Kingdom is higher than that of most other European countries, but we still have a long way to go before the full demand is met. We have, therefore, adopted several measures to improve the supply of kidneys.
First, a publicity campaign has been launched this year to encourage more people to become kidney donors. Kidney donor cards are now much more widely available. All general practitioners and chemists' shops have now received a further supply of cards and social security offices have them on display. Last month every civil servant in my Department received a card and consideration is being given to repeating this initiative in other Government Departments. The Driver and Vehicle Licensing Centre at Swansea now includes cards when all first provisional driving licences are issued. Various sporting organisations have offered to help distribute cards to their members and the general public. Leading diary publishers have agreed to include a reference to kidney donation in their diaries and many other private organisations have offered to help. New posters have been issued which are displayed in post offices. So it will be seen that we have not been idle in this 804 direction and, over the next few months, we shall be exploring further new ways of increasing the distribution of kidney donor cards.
There is not time for me to say much more in reply to the hon. Gentleman's speech. In order to stimulate public debate on this important issue, and to bring about an improvement in the supply of kidneys, my Department is to issue towards the end of the year a discussion document on possible amendments to the Human Tissue Act.
I take this opportunity of asking everyone to consider becoming a kidney donor. I hope that everyone listening to this debate or who reads about it afterwards will discuss freely the question of kidney donation and that all who are willing to donate their organs on their death will do something positive to indicate their wishes—
§ The Question having been proposed at Ten o'clock and the debate having continued for half an hour, Mr. SPEAKER adjourned the House without Question put, pursuant to the Standing Order.
§ Adjourned at half-past Ten o'clock.