§ 8.30 p.m.
§ Lord PARRY rose to ask Her Majesty's Government whether they will publicise the connection, now medically provable, between perinatal mortality and perinatal morbidity and their close association with mental and physical handicap. The noble Lord said: My Lords, it is a tradition, it is an axiom, of politics, that one should never apologise, nor should one ever explain. Perhaps because I hope for an apolitical, rather than a political, debate, I apologise for the complex wording of the Question standing in my name on the Order Paper. During the next 20 minutes I hope to explain both the wording of the Question and the need—almost a compulsive need—that I felt to bring this question before your Lordships' House.
§ Perhaps I should begin by asking an altogether simpler question. My Lords, do you know a handicapped child? Do you know the parents of tat child? 123 You probably do. The medical journal the Lancet featured in 1977 the problem of child handicap. It reported that there were 33,000 "very severely handicapped" children in Britain. It went further than that: there were 100,000 others who were "moderately severely handicapped". The two facts add up to 133,000 blighted lives. They embody heartbreak, difficulty, strain, for almost twice as many parents. They disguise as statistics the agonies of frustration, hopelessness, confusion and pain suffered by thousands among the handicapped.
Parents of most babies damaged in the womb, or immediately after birth, have no idea how the damage came about. Only now is medical science confident enough to analyse and to isolate the causes. Only now is it able to alert potential parents and the public to the dangers to the health of a new generation. We now know that we can avoid injury to thousands of babies. Doctors and their associates can tell us how. There is a traditional excuse for society:
Father, forgive them, for they know not what they do".
If we reject the warnings that we are being given by the medical profession, we will not be able to cite that excuse, nor will society have any excuse in the years that lie ahead.
I should like you to listen, my Lords, to Professor Paul Polani. He is a Fellow of the Royal Society. He is a director of the Spastics Society's Paediatric Research Unit at Guy's Hospital. This is what he says:
It is clear that if all current knowledge were fully applied, at least 40 per cent. of cerebral palsy would be prevented".
What does that add up to in terms of children? Six spastic babies are born daily. Two, possibly three, of them could have been born free of handicap. So I ask again, my Lords: Do you know a handicapped child?
§ Britain has 1,500,000 physically handicapped people. Some people like to talk in terms of economics. The economics of the total cost of services for assistance and rehabilitation of disabled people —this featured briefly in the splendid debate that has just come to an end—was about £3,000 million in 1976–77. That figure includes mentally handicapped, but 124 excludes all those disabled retired pensioners who are not part of those statistics.
§ Your Lordships will not need any explanation of the aims of the Spastics Society, nor information about all that it has done since its formation in 1952. It has brought the needs of those who have been handicapped by cerebral palsy not only to the attention of this nation, but to the attention of the world. Your Lordships will allow me, I am sure, to pay tribute here to the society, to the internationally respected work of its director, Mr.James Loring, and to his staff, both in London and in the Provinces. The Spastics Society's campaign "Save a baby from being born a spastic" is wholly positive. It is aimed at meeting all those individuals who want to see babies given a good start in living. The organisation is recruiting, publicising, educating, petitioning, and rallying people, so as to focus attention upon the proven facts.
§ Last Sunday week there was a rally in Trafalgar Square. Following it, a group of spastics in wheelchairs visited 10 Downing Street. Earlier this week there was an interdenominational service at Llandaff Cathedral. It was conducted by the Dean, the Very Reverend A. R. Davies. He was assisted by the Very Reverend Father Edward Regan, V.F., and the Reverend Dennis Banfield was with him. They were all conducting that service in the presence of the Lord Bishop of Monmouth, uniting the Church in Wales, the Roman Catholic Church, the Free Church Council—all solidly behind the Spastics Society's campaign.
On Friday, 28th April, a medical seminar was held at the Welsh National School of Medicine at the Heath Park, Cardiff, where, under the leadership of Professor Peter Gray, eminent paediatricians, gynaecologists, obstetricians, and psychologists endorsed the contention of Professor Paul Polani that at least 40 per cent. of cerebral palsy cases could be prevented. My right honourable friend the Secretary of State for Wales was present, and in a lunchtime speech he also endorsed the campaign. He said:
I offer my wholehearted support. I believe absolutely in the value of well-conceived and well-directed research, and I make resources for it available as freely as I can; but your efforts will secure much extra endeavour which will surely bring its rewards".
My Lords, if the Treasury would be half as forthcoming, we would be away to a fine start.
§ Here I should thank the noble Baroness who will respond to the debate for the help and encouragement she has given me personally in presenting the debate before your Lordships, and for the fact that the Government have encouraged my presenting this Question. I also wish to thank all those who will take part in the debate, and who have studied the subject in order to do so. If the noble Baroness were not such a good headmistress, and I were not such a good boy, I would now be trying to see what she has written in order to respond to the questions I am to ask.
§ For all its wordiness, this Question really asks whether the Government will publicise the connection between spasticity and the events occurring immediately before, and after, the birth of a spastic child. Infant deaths have been decreasing steadily over the past 10 years. But mortality is only a part of the problem. In fact, last Friday, one of the eminent contributors at the Cardiff seminar described mortality as the "tip of the iceberg". Because almost all infant deaths are known and their causes, generally identifiable, they tend to disguise, rather than to reveal, what he called the "great bulk of the problem lying underneath". There were 655,503 births in England, Scotland and Wales in 1976; 6,338 babies were still-born, and 11,764 died during the perinatal period. French figures show that for every baby who dies during that time, 2.5 per cent are damaged.
§ I should have said earlier that morbidity is another part of the problem. Doctors use this word to describe the proportion of disease to health in the births range. A morbid condition is a diseased condition, and there is a connection, that can be proved, between infant mortality and infant morbidity. The doctors also call the period around the time of birth the "perinatal period", and they measure that period as beginning at the 28th week of pregnancy and continuing through the seven days after birth.
As I said, French figures show that for every baby who dies during the perinatal period, 2.5 per cent. are damaged. Such a percentage applied to the United Kingdom would suggest 29,415 damaged
babies. Not all of them would be handicapped because some injury will be minimal, and some damage will clear but all will have suffered risk. As an illustration of the factors that put babies at risk, Professor Brian Hibbard, who is currently carrying out the major investigation into the detection of spina-bifida, told the Cardiff seminar:
Fifteen hundred babies need not have died if their mothers had given up smoking during pregnancy".
Applying the same arithmetic, your Lordships will already have worked out how many lived, marred unnecessarily in the womb.
§ There are three main forms of cerebral palsy. There is spasticity, there is athetosis and there is ataxia. Sufferers from all three types are commonly called by the general term "spastic". I have to give thanks here for the research and the briefing that many of us have received for this debate from Mrs. Mary Holland, who is administrative officer and researcher to Mr. Loring. She quickly would explain for your Lordships, as she did for me, that spasticity is characterised by disordered control of movement, muscle weakness and often disturbances of growth and development. Damage to the cortex of the brain appears to be the cause of the true spastic condition. It may affect both limbs of one side of the body, hemiplegia; both the lower limbs, paraplegia or all four limbs, diplegia and quadriplegia. Athetosis results when the basal ganglia of the brain are affected. The main feature of the athetoid spastic is the frequent involuntary movements which mask and interfere with the normal movements of the whole body. Ataxia results from injury to the cerebellum and is characterised by an unsteady gait and difficulty in balancing.
§ So we know, then, that all forms of cerebral palsy result from injury to, or a development of anomaly in, the brain. The cause of spasticity is a malfunction of that part of the brain controlling movement. The brain does not send out the appropriate signals which enable the limbs to do what their owner requires of them. After a while the nervous and muscular structures of the limbs themselves deteriorate. My Lords, I have neither the time nor the expertise to talk about specific hazards which have been identified, such as neonatal jaundice, the failing 127 placenta, prematurity, acquired cerebral palsies or infections, but for every 1,000 children two or three are spastics. They almost always suffer multiple handicaps. Nor are their handicaps always apparent at birth. Symptoms, although they are sometimes discernible during the first four or five days of life, usually develop later.
But, my Lords, I do have the time and the intention to return to the speech made by my right honourable friend Mr. John Morris at Cardiff on Friday. He then said:
Many of you, having undertaken the somewhat daunting but highly rewarding exercise of reading the long Court Committee Report on the Child Health Services, Fit for the Future, will remember that a full chapter and some eleven recommendations were devoted to the unborn and newborn child. Not the least important of these is that further research is needed into the causes of handicapping conditions and into the regional and social class variations in perinatal mortality and perinatal morbidity".
§ It is to these socio-economic aspects that I would ask your Lordships to turn with me for a few moments. It is currently fashionable to "knock" Britain. I have no intention of doing that. We are all of us guilty, too, because we are all of us fairly comfortable, of assuming from time to time that the major social difficulties have been removed from the majority of people in Britain. I think that each statement is, alike, false. Britain's record of perinatal mortality does not compare so well with that of some other Western European nations that is true. This evening I was given a note on Spain. We tend to be a bit smug about some of our European neighbours. These figures are apparently from the Department of Health and Social Security on the state of the publichealth for the year 1976, published by Her Majesty's Stationery Office. The Spanish figure was only 13.8 for infant mortality England's was 16.3 It is a recent Spanish achievement, for in 1970 the figures were otherwise. Then, Spain had an infant mortality of 27.8, as compared with 17.9 for England and Wales. I do not intend to go into this in detail, although I would happily do that in answer to any question that anyone might wish to put to me.
But, my Lords, if our perinatal mortality does not compare quite so favourably as it once did with that of some of our West European neighbours, then there is also
cause for very grave concern about the wide variations which exist within Britain itself. These variations exemplify the disadvantages that arise from the socioeconomic differences among our population The British Births Survey in 1970 stated:
There is nothing to contradict and everything to support the theory that social class differences are widening rather than diminishing".
We know that for ante-natal care to be effective it must begin as soon as pregancy is confirmed, and must continue on a regular basis. Statistics show that the woman who is late in booking is five times more likely to give birth to a dead baby than the woman who books early. And it is known that the late bookers and non-attenders are for the large part from the lower income groups. It has also been established that babies born into families of semi-skilled and unskilled workers— the fashion these days is to call them class IV or class V—are twice as likely to die (and that is not the fashion!) before the end of the first month of life as babies born to parents in the professional classes.
§ Maternal age is an important factor. Babies of very young mothers and babies of older mothers are at greatest risk. Again, the social differences show that women in social class V were considerably younger at the time of their first live birth than women in social class I; and I have a little note here which says, if any noble Lord is interested, that 20 to 29 seems to be the most advantageous age in the female population for child bearing. Low birth-weight, on the other hand, is the factor most closely related to mortality and to later morbidity. In 1974, 76 per cent. of first-day deaths and 58 per cent. of deaths within the first month of life occurred in low birthweight babies—babies weighing less than 2,500 grams; that is, the old-fashioned 5 lb. 8 oz. Low birthweight is not synonymous with either mortality or handicap—we do not wish to frighten anyone in this campaign—but babies of low birthweight are at highest risk. They are more easily damaged during delivery, and more readily succumb to infection Low birthweight carries an increased risk of cerebral palsy, epilepsy, autism, blindness, deafness and mental subnormality My Lords, 2,500 grams is the conventional threshold of low birthweight. The risks of death or handicap increase rapidly below this birthweight.129
§ Again, the hazardous relationship of social class can be related to the distribution of low birthweight babies. I have statistics here, and I could go on giving the low birthweight by social class. For social groups I and II, the percentage of babies of 2,500 grams or less was 4.5; social group III, 5.6; social groups IV and V, 8.2; single, widowed and divorced mothers, et cetera, 9.5. There is an even more dramatic figure Percentages for 3,000 grams or less begin at 19, go to 23.7, to 27.3 and to the astonishing figure of 33.3.
§ Single mothers form an increasingly large part of the child-bearing population, and statistics show that babies born to single mothers are at very high risk of death or damage. The British Births Survey in 1970 showed that the perinatal mortality rate for babies born to mothers in social class I was 7.5 per cent.; for babies of mothers in social class V the rate rose to 27.6 per cent.; and for babies of single mothers it rose to the staggering proportion of 37.4 per cent. Mothers between 15 and 19 are at very great risk indeed, especially the single mother.
§ How do we ensure, then, that all women will receive high standards of ante-natal care? The National Health Service can work very well, and we are proud of it, even now but too often it does not work well for the very people who need it most The middle and upper classes—and I use these phrases as being handy, without any apology—are for the most part articulate and aware. They can express their health needs to professionals, and if these are not met they are able to demand to know why and to press regional authorities for better services. But for the lower income groups this is not the case. Historically, these groups are viewed by professionals as inarticulate, and indeed they view themselves as inarticulate They are less inclined to question authority and less inclined to ask for services.
§ The unwieldy bureaucracy of the National Health Service can be formidable. Unintelligible forms, long delays for appointments, lack of evening or weekend hours, impersonal treatment, lack of communication, non-availability of facilities for other children—all these act to dissuade the very woman who most needs to seek ante-natal care from seeking it 130 and, in fact, persuade her to stay at home Women today are increasingly pulled by conflicting commitments: more and more women work outside the home—financially, it may be necessary and socially it may be desirable. The health needs of these women are not met and it is imperative that the provision of health services be looked at in the context not of yesterday's woman or of tomorrows woman but today's woman.
§ Looking specifically at ante-natal services, there are some models which we may suggest: ante-natal clinics should be open on evenings and/or weekends. This is not a question of a great outlay of cash. It is simple common sense. Transport to and from rural areas must be readily available. I live in a rural area where many young women are imprisoned in their modern bungalows all day long because their husband has taken the car to work at the refinery, perhaps, 20 or 30 miles away Child minding facilities should be available at the clinic every effort should be made to ensure continuity of care to enable the women to build a close relationship with the persons responsible for her care during pregnancy and the birth of her child.
§ Ante-natal care is not only concerned with medical screening procedures. It can help the woman to establish sound health habits: to stop smoking, to improve diet, to get enough rest. But this kind of advice can be given only if a ling of communication is established. It may be that this can best be done by the community midwife—this has been the experience of some of our neighbouring countries—who can visit the woman in her home and who is willing and able to understand and discuss individual problems. It is known that many single, young women fail to attend ante-natal clinics because they feel frightened, ashamed and scared. This is tree of the single mother trying to disguise the fact that she is pregnant in the first three or four months of pregnancy.
§ The role of the community midwife is undervalued and under used. Between 1971 and 1975, the community midwifery staff in England was reduced from 5,501 to 3,220—a reduction of over 36 per cent. in four years. Yet both Sweden and Finland, whose perinatal mortality rates are better than Britain's, depend heavily on 131 midwifery ante-natal consultations. In Sweden, out of an average of 13.5 ante-natal consultations per woman, 9.5 are with midwives and four with doctors. In Finland, with an average of 14.5 consultations per woman, 11.8 are with midwives and 2.7 with doctors. There is no conflict here, with those doctors who do a massive job and faithfully discharge their duties but there is some conflict with the organisation of surgeries which make it impossible for women to get to them in time to be helped by them,
§ Education is the cornerstone of a healthy population. At an early age, children need to learn the basic facts of healthy living and they need to learn the reasons. They must learn to be responsible for their own bodies, to understand how it works—and how readily this debate runs from that debate on the family to which your Lordships have just listened!—and to know when and where to seek care and to speak out when they do not receive that care. I could go into regional variations in detail. I can quickly say that 2,762,000 people are fortunate enough to live in Wales. If the incidence is 2.5 per cent. of the population, the sad fact is that there could be 5,500 spastics born there next year. The Spastic Society records show a lesser figure, currently 1,200 but there are disguised cases of spasticity as well as open ones.
§ I have some figures about deaths for one-year-olds per 1,000 live births. For example, the lowest area is in Dyfed where there were 11.3 infant deaths and, again, in perinatal mortality, it was the lowest figure at 14.5. The highest, in West Glamorgan, gives cause for regionl and local concern there. Those figures were 16.3 for infant mortality and 23.1 for perinatal mortality. We must do more research into the causes of that regional variation. I am not going to go much further, except to say that in 1977 for perinatal mortality provisional rates the still-births and deaths under one week of age per 1,000 total births showed that the lowest areas in England were East Anglia at 13 and the North and West Midlands and the Mersey regions at 19. There are pages of figures that I could give.
Let me end by returning to the very responsible speech by a Minister of the
Government in Cardiff which I quoted earlier. The right honourable Mr. John Morris, the Secretary of State for Wales, said:
There are, as we are only too well aware, many other handicapping conditions, some whose causes we do not even know. It must be our aim to press forward the frontiers of knowledge and understanding. But what distinguishes cerebral palsy from most other handicapping conditions of the young baby—and what lends such special importance to your efforts"—
the Spastics Society's—
is the extent to which existing knowledge, properly applied, can prevent handicap and bring forth fine, healthy babies: and the conviction that if we work hard enough we shall gain new knowledge and so be able to ensure that more babies who might have been handicapped are saved".
§ My Lords, you have been very patient. I make no apology for the fact that I have run slightly over my time. We are talking about an under-privileged section of the population, those children who are not marred in the womb but they are marred by unfortunate accident or by ignorance. We are talking about the possibility of mounting a rescue operation, of phasing it properly. I am happy that in this debate the support comes from all sides of the House. I hope we shall be able to approach the Government (whatever the Government might be at any time) in the confidence that it is always possible to muster all-Party support in Britain for the priority of priorities: seeing that children that set out to be born good, strong and healthy, are not marred along the way because we place our priorities in the wrong direction.
§ 8.57 p.m.
§ Lord BELSTEAD
My Lords, I think that gratitude is more than usually due to the noble Lord, Lord Parry, for the Question which he is asking today because his Question is of such vital concern in so many ways. First, it is vital from what I deduce from the noble Lord's speech to the about 40,000 babies who either died or were damaged perinatally in 1976, the last year for which, I understand, figures are available. Doubtless, many of those children could not have been saved. Some of them will grow up to overcome the handicaps or will not be handicapped at all; but anything more which can be done to reduce those statistics which so often 133 represent sadness for the parents and tragedy for the child we simply have got to do.
Although infant mortality rates, as the noble Lord fairly said, have been falling steadily in this country, I think the noble Lord also said enough this evening to show that compared with some other countries we still have a very long way to go. I should like, also, to recognise the work which the Spastics Society is doing in order to draw public attention to this. One of the notable features of the care and education of the handicapped in this country is the work of the voluntary organizations. I think that it is particularly appropriate that the Spastics Society should be concerned especially with perinatal mortality and disease. Together with the other voluntary organisations, it is the Society's objective (which I know, finds support in this House) that, whenever possible the handicapped person should be cared for within the community. A Society which has that objective has the right to leave no stone unturned to try to reduce the number of children who may never have the opportunity of a life at home at all.
The noble Lord's Question is of vital concern also to the Government; because if I may confine what I am going to say to the last part of the noble Lord's Question only, clearly, if mental and physical handicap owing to damage before or soon after birth can be further reduced, so will the demand on the health, education and social services be lessened and more proportionately can be done for those who are going to have to suffer some handicap.
In the context of this debate, therefore, I should like to ask the Government some questions about the demands made upon these services at the present time. The first question is whether the noble Baroness who is to reply for the Government can tell us what is being done to meet the recommendations of the Court Report. This is not the occasion to embark on any detailed discussion of that report, and indeed your Lordships debated a Motion moved by the noble Lord, Lord Lovell-Davis, just over a year ago. But, in their recommendations, Professor Court and his Committee were concerned specifically with handicapped children, and I should like to draw attention to three of the recommendations.
134 The first is the general one which runs through Chapter 8 of the report, to the effect that the ante-natal and maternity services must reach out to the people who will not reach out to those services. I realise that, over the years, a great deal has been done by the combined work of doctors, nurses, midwives and other professional workers to promote the health of unborn and new born babies; but the statistics of perinatal and infant mortality show a considerable discrepancy between different areas. One is driven to the conclusion, which was very much borne out by the speech of the noble Lord, Lord Parry, that for some people in some places—those who are almost certainly most in need—the lines of communication between parents (sometimes a single parent) and the health and social services have to be strengthened still further.
I shall not select any particular recommendations of the report which would contribute to this objective because I think it is for the Government to say what they feel can be done in the present economic climate. But, although it is eight years ago, it is a sobering thought that in 1970 a study of families with cerebrally-palsied children was undertaken by Sheila Hewett in the Midlands and, out of the sample of families which she took, 40 per cent. had not known that their child was spastic until after the ago of two and 17 per cent. had never been told of their child's condition at all.
The second recommendation, which is not unique to the Court Report, is the need for better education for parents. Again, I realise that a great deal has been done in this respect but, if other countries as widely dispersed as Finland and Japan, Sweden and France, Canada and Switzerland can outstrip us in our attempt to reduce infant mortality, then clearly a great deal remains to be done in communicating with mothers whose babies may be in danger.
In this, I must say that I feel the schools have an important part to play. Although I have always very much supported the line which in recent years the Health Education Council has been taking in fostering discussion in schools about personal relationships, I am by no means convinced that within the programmes of 135 health education it is made clear enough to girls and boys what dangers can await a new-born child and to whom one might turn for advice and help. Imagine just for a moment, my Lords, having a group of pupils who may not be very good at expressing themselves and who may, not unnaturally, have a resistance to authority: surely it is crucial for such a group to be made aware that one day their own children are going to depend upon them and upon their ability, as parents, to seek help from the medical and social services.
This must involve far more than mere discussion in a classroom. It needs visits from and to people working in the relevant services. It needs the opportunity, at any rate for some pupils, to work with the handicapped—something which I think is always to be supported—and absolutely clear warnings of the causes and the dangers of possible damage to a child during and after pregnancy. I repeat that I think one further condition needs to be met: young people need to know who to turn to for help.
Your Lordships who know so much more about this subject than I do may remember that the Younghusband Report in 1970 emphasised the absence of a single agency to which parents could turn for advice. Although I realise that the structure of the Health Service has changed very much in the last eight years, I think there is enough evidence for us to suspect that people do not always know who to approach when they need advice, particularly when they have a handicapped child and when they feel diffident about making an approach at all.
What an imaginative idea has been the maternity book which, I understand from the briefing which has kindly been sent out by the Spastics Society, has been introduced in France, and the incentive payments to get mothers to attend ante-natal and referral centres. Although it occurs to me that these payments may miss out some of the particularly difficult cases of women who simply refuse to contact the medical services, this method of attracting people to the services and the information in the maternity book must have had their effect, because the fact is that the French mortality rate has dropped well below ours.
136 The third recommendation of the Court Report which I think is perhaps relevant is the need for the increase in the number of therapists working with handicapped children. Again, many of your Lordships will know better than I the value, for instance, of physiotherapy not only directly to the child but also to the parents, who can learn through physiotherapy or from the physiotherapists the possibilities for and limitations of their own child. I should like simply to ask the Government how far towards the target of 2,500 speech therapists set by the Quirk Report in 1972 we have reached and whether the numbers of physiotherapists, occupational therapists and remedial gymnasts working with children show a shortfall and, if so, what steps are being taken to remedy that.
I apologise for appearing, to have moved right away from the central Question asked by the noble Lord, Lord Parry, but I do not think I have done so in reality. Because these three recommendations which I have selected will cost money and because many of the services for the handicapped which we all wish to see expanded need more money, we would perhaps agree that one way of finding that extra money is, to use the jargon, "to save it" by reducing the problem of handicap which starts before or immediately after birth.
With others of your Lordships speaking this evening, I have deliberately not embarked upon the central theme of the noble Lord's Question, namely the special need for obstetric and paediatric work in order to save life at birth. I must say, however, that I should just like to mention that I would very much support anything the Government can do to provide maternity units of a really viable size, with good follow-up facilities, as well as a continuing reappraisal of the research on the needs of different areas so that resources can always be brought to the areas of greatest need.
Finally, may I just ask for some information about the education of handicapped children? Since 1970, local education authorities have been responsible for the education of all handicapped children in Great Britain, and eight years ago many severely subnormal children were in long-stay hospitals, to some of which were attached hospital special schools. Many 137 of these schools had been given a low priority in hospital capital building programmes. Can the noble Baroness give me any information this evening about the progress which has been made in replacing or modernising hospital schools? To what extent has it been possible to remove severely subnormal children from longstay wards, and provide other facilities for them? I should be interested to know what is the total capital expenditure for special education, and what has been the increase in capital expenditure in real terms over the last three years.
I have little doubt that the answers to those questions will reveal that increased resources continue to be needed, and this provides another aspect of the same case in support of the Question of the noble Lord, Lord Parry, today. I hope—indeed, I know—that the Government will take very seriously what is being said in the debate this evening, for upon the health of newly born children so much ultimately depends.
§ 9.9 p.m.
The Countess of LOUDOUN
My Lords, it is now 15 months since the Court Report, Fit for the Future, the Report of the Committee on Child Health Services, was published. Though we have had a mini-debate on it in this House, the report has never been debated in the other place, which has caused great disappointment to the many doctors who contributed their time and energies to it.
This report criticised child health care provisions generally, and stressed that better care of the mother, beginning as soon as pregnancy was confirmed, and certainly not later than the sixteenth week of pregnancy, and continuing for her and the baby until the fourth week of postnatal life, would reduce the risk of brain damage and the number of mentally handicapped children born, as well as reduce the number of those whose brain is damaged at or shortly after birth.
This claim has been borne out in other countries, too. In Sweden, for example, improved care during the perinatal period has resulted in a reduction both in infant deaths and in infant handicap. Six years ago, the French Government, too, instigated a series of perinatal programmes which have been most successful, resulting in a dramatic 138 reduction of babies born handicapped. Bearing in mind that caring for just one severely handicapped person from birth to the age of 65 can cost the community as much as £250,000, surely money spent on prevention makes sound economic sense, apart from the other factors involved.
We must have an effective programme of public health education, emphasising the responsibility of pregnant women to attend for periodic examinations and the need for them to follow the advice of their doctors Much more publicity needs to be given to the value of regularly attending ante-natal clinics. This is not always easy. Some people—those living in rural areas, for example, or those with other young children who cannot be left—may find it impossible to get to a clinic, and here the rôle of the community midwife is all-important.
It was rather worrying to read, in the Commons Hansard of 14th March this year, a statement from Mr. Roland Moyle, the Minister of State, that progressive cuts in the maternity services are now planned for the next five years. The latest available figures on the number of community midwives working in Britain show a reduction from 5,000 to 3,200 between 1971 and 1975—a reduction of over 36 per cent. in four years. Can the Minister give me more up-to-date figures?
Great strides have been made in this century in reducing the number of deaths of mothers and babies. In the decade from 1910 to 1920, about 100 children in every 1,000 live births died curing the first year of life, usually during the first few weeks. By 1976, that figure had been reduced to 14 per 1,000 live births. This is an impressive improvement, but it is still not possible to predict with complete accuracy the outcome of a pregnancy, or to prevent the occurrence of handicap. I only wish it was.
§ 9.13 p.m.
§ Lord LOVELL-DAVIS
My Lords, I too, think that we owe special thanks to my noble friend Lord Parry for initiating this debate. Its subject is one of tremendous importance to us today and to the unborn children who can be saved from death and damage In the past—in what are often ludicrously referred to as "the good old days"—when families were 139 large, it was common expectation that some of the children might be sickly or might die in infancy. As a child myself, I remember an old lady who was always talking about the children she had lost. At the time I remember thinking that it was very careless of her.
The situation has changed, and with it the expectation of parents. Families are small; medicine has advanced; the parents of today expect their children to survive and to be healthy and well. So what can be done to meet that expectation and to improve our record so far as producing healthy children is concerned? I am going to concentrate on just one aspect of what we can do. It is quite simple. We can make sure that care is given to the mother in the months before she gives birth.
Recently, the Department of Health and Social Security published a booklet called Reducing the Risk. Safer Pregnancy and Childbirth. In it, the case is made for ante-natal care and it emphasises the relationship between the health and behaviour of the mother before the birth and the survival and health of her baby. It contains some startling facts. One of them has been quoted by my noble friend Lord Parry: that the perinatal death rate is nearly five times higher in the children of mothers who are late in "booking" than in those who are early. And why? One of the reasons is given five lines later, where it reads:Some women are simply unaware of the availability and importance of antenatal careThat is where we could begin—by making sure that everyone understands the importance of getting ante-natal care, as the noble Countess, Lady Loudoun, has just said.
If we want healthy children, then pregnant women need to be in contact with the health services, preferably in the first three months of their pregnancy. It is estimated that about 20 per cent. of women in Britain still fail to seek or are not actively offered relevant care in this period. Twenty per cent. is an appalling figure, of which we should be ashamed, because one of the very worrying aspects of our antenatal services is simply that a proportion of pregnant women do not attend a doctor or a clinic until their baby is nearly due. As a society, I think we should be asking 140 ourselves whether we can do something generally throughout the country to encourage pregnant women to seek contact with the health service.
I shall deal with the question of financial incentive in a moment, but first let us look at the possibility of creating the kind of atmosphere in which pregnant women would always be encouraged by everyone around them to go to a doctor or to a clinic. Health education campaigns are the obvious suggestion, and the Health Education Council will certainly reply that if they get the resources they will mount a campaign. Well, all right; if we believe in the prevention of handicap and disease, that is one area where we should be putting our money, but I think there is more to it than that.
The sort of campaign that is most effective, and possibly most inexpensive, does not depend solely on posters and newspaper advertisements. After all, consider the cigarette manufacturers. Their printed exhortations to kill yourself by smoking always carry—and in the context it almost seems to add to the inducement to smoke—the Government warning that it can damage your health No, the sort of campaign I should like to see is one which is much more persuasive. For example, "The Archers" is a radio programme that is renowned for putting across useful information, particularly for farmers. What I should like to see is a campaign which encouraged radio series like that, or local radio with its enormous listening figures, or television series such as "Crossroads" and "Coronation Street" to project situations where the pregnant girl is shown going to a doctor and taking his advice on how to produce a healthy baby. I know from my own experience—anyone involved in the business of communication knows—that there are many ways in which we could raise the general awareness of the importance of ante-natal care.
In saying this, I should like to join other noble Lords in acknowledging the magnificent work being done by the Spastics Society in publicising the situation as it affects the incidence of cerebral palsy. Evidence suggests that most expectant mothers do in fact want the best for their children, but there remains the percentage who do not come into contact with a doctor until their baby is nearly 141 due. I believe that we should be looking very carefully at why this is before we consider adopting a blanket solution, such as financial incentives—or penalties!—as has been suggested.
Ante-natal care involves attendance at a clinic or an early visit to a doctor so that certain medically important conditions can be identified. The clinic is also an important source of advice about behaviour—about control of weight and diet, the avoidance of cigarettes, alcohol and unprescribed drugs. Recently, research by Hilary Graham and Lorna McKee at York University, financed by the Health Education Council, has been conducted into problems in ante-natal care. The studies, based on interviews with mothers during pregnancy and six months after birth, have not yet been written up and completed, but preliminary findings permit some conclusions on the take-up of services. One of them is that under-utilisation of antenatal and child health services results from inadequacies in the services themselves.
Many of the inadequacies are apparent to most women who have used the antenatal services. My noble friend Lord Parry has referred to some of them. Clinics are often difficult to get to, and they are not held at hours which are convenient for working women or women with several children. There is often a long wait; there are no play facilities for children accompanying their mothers or places for other relatives to wait. One of the major criticisms of the ante-natal services, made at a Department of Health and Social Services Child Poverty Action Group Conference, on reaching the consumer in the ante-natal and child health services, concerned the lack of sensitivity on the part of the staff. Too many clinics treat an expectant mother as a component of a production line—urine testing here, blood pressure there—passing through the hands of a confusing mass of professionals who are hardly interested in the person at all.
There is the story of one expectant mother who lay on the examination couch in the clinic and when the doctor removed the blanket covering her large belly he found the word, "Hello" written across it. "What's this?", he said. "Well", she said, "that's the only part of my anatomy to which you address yourself 142 —you never look at my face". Unfortunately, not all women would discover such a witty way of pointing out their objection to being treated as an object in this way. So I think that the professionals and administrators in the Health Services should think carefully about the quality of care offered to women who attend clinics. If a neighbour tells you that you are not going to be particularly well-treated when you get to the clinic—if you are going to come away more confused and worried than when you went in—then there is not much point in making an effort to get there. Given the degree of inconvenience and insensitivity that exists, perhaps the surprising thing is that ante-natal clinics have as many customers as they do.
As we have already heard, some parts of the country have much lower rates of perinatal mortality than others. For example, on average from 1974 to 1976, in the figures to which my noble friend Lord Parry was referring, there was a variation from 12.6 deaths per 1,000 births in Oxford to 24.2 in Liverpool and 27.6 in Wolverhampton. In short, a baby born in Liverpool or Wolverhampton rather than Oxford was twice as likely to die at birth or in the first week of its life. That is a fact—an appalling fact.
There is no doubt that it would be possible, for example, to reduce the incidence of cerebral palsy very substantially if we were able to put into practice, in all maternity units, policies already in use in the best. Evidence in support of this view comes not only from Sweden but from changes in the incidence of handicap and in the development of vulnerable children who have been adequately treated in maternity and neonatal units in the best of our university teaching hospitals.
What I am saying is that we are able to provide the quality of care in some places, and one area of research which I think is worth encouraging would aim at determining whether it is possible to analyse the shortcomings and the possibilities in services at local level and to follow such subjects by demonstraticn projects designed explicitly to correct the unsatisfactory features. We have the knowledge to save more children from death and handicap; we need to find ways of applying that knowledge.
143 As the noble Lord, Lord Belstead, said, the services must reach out to those whom they seek to help. At the time when we are looking at quality of care, at the examples of good take-up of services and we are trying to learn from them, we should also be paying attention to the reasons why different groups of women do not come into contact with the services. For example, we must ask ourselves whether the introduction of an overall financial incentive would encourage those groups to seek ante-natal care.
There are the teenage mothers, the ones who do not even want to admit that they are pregnant and who need a totally different approach from the woman with so many children that she just cannot fit in a visit to a clinic and still fulfil her responsibilities to the rest of the family And what about the difficulties of immigrant groups, where women have different cultural patterns or do not understand enough English to benefit from a clinic visit? What about people who never want to approach anything that seems official, where people are in uniform? Again, there are those who are frightened by doctors and nurses, or simply too disorganised to be able to take up appointments. Is a financial incentive going to attract them?
The maternity grant at the moment is £25 paid on a husband or wife's National Insurance contribution; but many of our most vulnerable groups are women who do not qualify anyway. The figure paid in France is more than five times as much and it is paid in three instalments. The first third is forfeited if it is not claimed in the first three months after contact with the doctor or clinic. If we are going to introduce a maternity grant payable only to those who register early with a doctor, we have to be very sure that contact with the Health Service is more than just a brief and perhaps unsatisfactory encounter We have also to be sure that the financial incentive is not simply a penalty and that the already deprived are not made even more deprived. To be effective financial incentives will have to involve large sums of money, and there may be better ways of spending it. Skilful use of publicity, based on research into these target groups, is very important.
144 So, my Lords, to sum up briefly, I have suggested that steps be taken to raise the level of awareness of the importance of ante-natal care. I, too, am asking that services be examined in the light of the use that is made of them; that the DHSS should look into the reasons why in some places ante-natal services have a higher take-up rate and see whether there are lessons which can be learned and applied to other localities. Meanwhile, any health district which has not reason to feel proud of its record in perinatal mortality and morbidity should see if the women who remain untouched by its services could not be reached and helped if a conscious effort were made to look at the service from the woman's point of view. These steps alone could help to reduce the number of damaged babies, who often ultimately become helpless adults, we needlessly bring into our society as year succeeds year, at a cost in terms of human suffering and misery that is, and should be, unacceptable.
§ 9.28 p.m.
§ Lady KINLOSS
My Lords, in asking his Unstarred Question the noble Lord, Lord Parry, has highlighted what is a very worrying and sad aspect of life today. The French estimate that for every baby who dies perinatally 2.5 babies survive who are perinatally damaged. It is estimated from these figures that over 29,000 babies were perinatally damaged in greater or lesser degree in England, Scotland and Wales in 1976. Some will not be permanently damaged. Taking this as an average over four years, in simple terms that means that in each four years the number of perinatally damaged babies born is roughly equivalent to the population of the City of York or the City of Oxford. Of course, this damage may clear up and can vary in its degree of severity. But, all the same, each year there is this substantial number of cases of perinatally damaged that must be cared for.
The doctors have been far from idle. After years of patient research it is now possible that 40 per cent. of the babies born with cerebral palsy, the commonest perinatal morbid condition, could be prevented from having it if it was possible for them to be reached by treatment in time. It is precisely here that the noble Lord, Lord Parry, deserves our gratitude for asking this Question tonight, because 145 no amount of medical knowledge can prevail without the active co-operation of expectant mothers, especially their cooperation in looking after themselves and their diet, which I understand to be of the utmost importance.
The National Council for One-Parent Families is, quite rightly, concerned in particular with teenage mothers. These young girls produce a very high rate of damaged or still-born babies. They themselves have been able to conceive, but their bodies have not yet reached the full maturity desirable for healthy motherhood. Very many of these young girls are unmarried. Statistics show that illegitimate babies are half as likely again to die within one year of birth as legitimate ones. In many cases the mothers will have had a recent injection against rubella a short time before conception and thus stand a greater risk of bearing a brain-damaged child. For quite obvious social reasons, these girls are less likely to attend a clinic for ante-natal care until later on in their pregnancies. They suffer an embarrassment that must first be overcome. The girl may be either afraid to tell her family or have no near relative to whom she can turn for help.
The problem, therefore, is to a great extent that of the unsupported mother. But not all of these unsupported mothers are unmarried. Would the noble Baroness who is to reply feel able to ask the Government to look again into the problems of the unsupported mother? It makes no difference whether she has been widowed or divorced during pregnancy, or whether she is unmarried. These mothers all have similar problems, and they are not all simply monetary ones.
There is the problem of non-attendance at clinics. Maybe an expectant mother already has young children whom she cannot leave during the day; or the unsupported or unmarried girl may not be able to afford time off from work to attend Perhaps evening clinics could be introduced to help all expectant mothers with problems of attending clinics during the day, when perhaps their husbands are at home to look after any other children there may be. I understand that family planning clinics are often held in the evenings. Perhaps some ante-natal clinics could take place at similar times.
146 It is an interesting but sad fact that babies born to unmarried mothers are twice as likely to die within one week of birth as babies born to mothers with husbands. Our partner in the EEC, France, has provided us with a particularly interesting example. They have drawn up a seven-point plan, of which two points are of immediate interest. The first is a maternity record book. The second is a substantial maternity grant. I think an especially good idea is the maternity book. It is the property of the mother. In it is recorded a full record of the pregnancy and its history. If the mother moves she takes this book with her, so that everything is known to the medical staff in the new district. There are special referral centres for any special problems. Not least it tells her what tests she should have and why she should have them. It also gives her a small amount of advice.
The second point is the maternity grant of three instalments paid over the nine months, conditional upon her regular attendance at ante-natal clinics, and for any special problems, at referral centres. These attendances at the ante-natal clinics have the effect of greatly reducing perinatal morbidity and mortality. In plain language it means fewer damaged babies. Quite apart from any humanitarian questions, which of course one cannot forget, it is estimated that it costs up to a quarter of a million pounds to look after a disabled person from 16 to 65. In terms of human suffering, we cannot measure it in money. Far better to prevent suffering than to alleviate it. Here we can offer the Government a chance actually to save money while helping others.
§ 9.34 p.m.
§ Baroness FAITHFULL
My Lords, before I add my contribution may I, on behalf of Baroness Robson of Kiddington, offer her apologies for not being here tonight? She has sent me her contribution, which I shall try to weave into my own speech, if I may.
I am particularly grateful to the noble Lord, Lord Parry, for initiating this debate. As vice-chairman of the Council of Dr. Barnado's I am involved, through the Barnado organisation, in the care of handicapped children who cannot be 147 cared for full time in their own homes. Likewise, as an ex-director of social services, I know the anguish and constant toil which parents of handicapped children experience and, as chairman of the Adoption Resource Exchange, I know the number of handicapped children whose parents seek adoption for their children, feeling unable to cope themselves. Therefore, I see, as it were, the end product.
The human tragedy is beyond calculation. The cost in terms of finance is something which this country cannot, and indeed should not have to, afford. Prevention is surely less greedy as regards resources than long-term care and treatment I shall not quote the figures that other noble Lords have quoted, but perhaps the greatest tragedy of all—this has already been mentioned—is to think that of the cases of cerebral palsy 40 per cent. could have been prevented. I do not want to appear dramatic, particularly on a subject such as this, but we, as a society, should be shocked when we learn of a case of a battered baby by his or her parent. Moreover, we should be as equally shocked to think that, as a society, we have allowed that to happen to 40 per cent. of these children.
Other noble Lords have mentioned the differences and variations in local areas. Perhaps I may again quote some figures. In 1975—these are the latest figures available—the perinatal mortality rate, that is, still-births and deaths under one week of age, per 1,000 total births varied, as has already been said, from 15..6 in the Oxford Area Health Authority to 22.1 in Merseyside and 33 in Wolverhampton I am not a doctor and I think that I am right in saying that no doctor is taking part in the debate. However, we have of course, a doctor in the House.
§ Baroness FAITHFULL
My Lords, the doctor may be able to correct me if I am wrong. The noble Baroness, Lady Robson of Kiddington, telephoned me to say that, according to the report of the Working Party on Infants and Perinatal Mortality, at least 1,000 surviving babies 148 are born severely mentally impaired each year whose condition might have been prevented by the full application of modern technology. She has also written and wishes me to quote the following statement from Professor Curzen of the Westminster Medical School and Queen Mary's, Roehampton. He writes:The relationship between perinatal morbidity and subsequent impairment of physical and mental development has been scientifically established. It has shown that pre-term and light-for-date babies remained disadvantaged into childhood on account of reduced physical and intellectual development. Many of the causes of premature labour such as hypertension are amenable to treatment in pregnancy and, moreover, premature labour can often be inhibited by drugs. The light-for-date baby is due to impaired placental function. Ninety per cent. of these babies could be correctly diagnosed at the beginning of the third months of pregnancy by the use of diagnostic ultrasound".I should like to ask the Minister, if I may, about the present allocation of resources and priorities. In the document issued two years ago by the Department of Health and Social Security and entitled Priorities in the Health and Social Services, and in the document issued, I think, last year by that Department entitled The Way Ahead, priorities were given to the care of the elderly, the mentally handicapped and the mentally ill.
The cruel dilemma which faces the country is: where do we put our money? I find it hard to say this because we know that the geriatric and the mental health services require money but, if we must have priorities, and if we had put money in the maternity services, would that not have prevented us spending so much money later on? I recognise that the Government have a very difficult decision to make on the question of priorities. But we are asked—and I quote from my noble friend Lady Robson of Kiddington—to economise on the maternity services in order to spend money on the mentally ill and the mentally handicapped".By doing this;We are perpetuating the situation. The reason we need more money in the maternity services is that there is a great shortage of radiological experts in ultrasound, and there is a great shortage of skilled people in the cyto-genetic units of this country".Both my noble friend Lady Robson and I come from Oxford and we are proud that 149 Oxford has such a low rate. However, we must ask ourselves why.
At this stage, I must pay tribute, first, to the old Radcliffe Infirmary and certainly to the John Radcliffe Hospital, with its very good nurses and doctors and its very good back-up services, but particularly to the very great happiness that exists which relieves tension and makes for the happiness of the mothers. We feel sad and sorrowful that this does not apply in every part of the country. Given thought and planning, I am sure that it could. It is extremely sad and disastrous that these figures are not reduced, as they could be, given more resources and perhaps more thought.
I had several more points to make but they have already been made, so I should like to raise one other matter, to which reference has not been made—namely, the question of personal consultation during pregnancy. So often these days we have set up community clinics and community centres on a managerial basis. However, we are no longer visiting in the homes and giving personal consultations to those who are nervous, fearful and afraid. That runs throughout the whole of our public life. Policemen are no longer on the beat; I regret to say that social workers are not doing casework and visiting in the homes as much as they used to. There are some pregnant mothers who will never go to the clinic and who need to be followed up in their homes so that they can have a one-to-one relationship with a midwife who understands their problems.
I turn to the question of the health visitor and the midwife. Both these professions are outstanding, but in some areas there is only one health visitor to 17,000 people. Are we using our midwives as we should and are we helping them to visit the individual homes of those who most need such visits?
§ 9.45 p.m.
§ Baroness MASHAM of ILTON
My Lords, I should like to thank the noble Lord, Lord Parry, for bringing to your Lordships' notice this evening the Question that mental and physical handicaps are associated with the causes of perinatal morbidity and perinatal mortality. I 150 should like to tell your Lordships that it is not only the Spastics Society who are concerned; it is many people throughout the country. But I hope that this debate will help to make even more people aware of a situation which, with public support and pressure, I hope will be improved.
If a baby dies within the first few days of birth there is great sadness and emptiness for the family for some time, and if a baby, through nobody's fault, is born handicapped that is tragic but acceptable in the terms that everything had been done that could be. But, my Lords, if a baby lives and becomes mentally or physically handicapped through lack of skill or attention, that must be by far the worst situation for a family to live with. When a mother or father has to look at a twisting, dribbling child struggling with life and compares it with a lovely, healthy baby, and the cause could have been avoided, that situation is surely the most difficult to accept.
This Question is ideally placed as an extension of the previous debate,To call attention to the steps taken by the Government in support of the family".A handicapped child can mean a handicapped family. I hope, when the Minister sums up today, she will tell us that the Government are very concerned about our bad record of perinatal mortality and perinatal morbidity, and our handicapped children who are born disabled unnecessarily, and that they are going to do something about it.
Perhaps we can take some lessons from the French. The incentives given during pregnancy to French mothers, which seem highly effective, must be worth exploring; at least so say all of us in this debate apart from the noble Baroness, Lady Faithfull, but I am sure that she will agree with us, also. In a country like ours, which is becoming a geriatric problem, are not our healthy babies the best investment we have?
I quote from a newsletter I have received from Huddersfield.Could it be the reason for the heavy incidence of disabled children among the poorer classes that babies are being horn in such inadequately equipped conditions? Can it be allowed that penny-pinching at the scene of birth can be 151 adding to the tragic numbers of handicapped persons? This is something that needs investigating now. I would hope as many of our members as possible write to their MPs requesting that some very searching questions be asked in Westminster".I am a member of a community health council, and our children's group are looking into this matter with great concern. In 1976 in the Yorkshire region there were 644 infant deaths. It is difficult to find out how many of these could have been avoided. I hope that every community health council will study and get published the figures of infant and perinatal mortality rates and will also study the incidence of handicap in their districts.
Research tells us—and the noble Lord, Lord Parry, has already said—that seven babies out of every 1,000 born to women in what is medically termed Social Class I died But for women in Social Class 5, 27 babies died in every 1,000 The perinatal mortality rate rose to 37.4 deaths per 1,000 births to single mothers. In the deprived areas of Northern Ireland the problems are even worse. There are many different reasons for these differences, such as education, diet, violence, and so forth. But one of the prime reasons for the lower death rate in Social Class I, I think, is that the women select their own gynaecologist. They generally choose one through recommendation from their friends. If they do not like and trust their doctor they can go to another one. They are free to do this because they pay for his services.
Confidence in one's gynaecologist is most important, and if there are complications, continuity is vital. So often it is lack of personal continuity of medical treatment and the fact that the National Health Service patient has to take pot luck as to who she gets which causes numerous problems. In some health districts this is not so. The National Health Service is excellent, but I am afraid that the service is not the same throughout the country.
In the last two months, I have received many letters from worried midwives over the proposed Briggs legislation. These dedicated people feel that there might be a lowering of standards. Many midwives are worried about changes. Perhaps this 152 is lack of confidence in the National Health Service and, because of the complicated channels and tiers of administration and committees, information gets lost on its way to the vital workers who are the people dealing with patients. The status and training of midwives varies throughout the Member States of the EEC. I hope that the Government will look very carefully into this serious problem and that the highest standards will be promoted and second best will not be made a compromise in this situation of training midwives.
In recent years, much has been said about sex education in schools, but would it not be a splendid idea to spend at least as much energy on education for motherhood and the importance of bringing happy, healthy babies into the world? It is encouraging to find an increase of research units working on so many problems relating to disability. It is necessary to find the cause of spina bifida, cot deaths and the perinatal problems. Your Lordships' House is full of experts from all sorts of professions. In a debate like this it would have been of great benefit to have a paediatrician speaking, but, unfortunately this is one important speciality which your Lordships' House does not include.
Our local hospital and the little maternity home which are situated about a mile apart are divided by a railway line with two level crossing gates. If a caesarian operation has to be performed the patient in labour has to be bundled into an ambulance and transported across to the hospital, where the operating theatre and blood supplies are. If the gates are closed, the emergency has to wait until the trains shunt backwards and forwards. There must be many outdated hospitals such as this in our country. The facilities for maternity services must be of the highest standards. I think many local hospitals want to hold on to their own little homely kingdom, and local support for this can be very strong. I hope that the Government will take a positive stand and will sell the need for maternity units which are all fully equipped and up to date.
§ 9.55 p.m.
§ Baroness DARCY DE KNAYTH
My Lords, I too wish to thank the noble Lord, 153 Lord Parry, for bringing this important subject before your Lordships' House. I hope very much that the Government will publicise the link between mortality and morbidity in the perinatal period and the link between this and mental and physical handicap and that, as a result, a programme to improve the pre- and post-natal services will be initiated.
We have heard today much of the examples of France and Sweden and of the remarkable reduction in handicapped births that has resulted. A programme such as that followed in France would of course be expensive, but not compared with the cost of caring for the handicapped person for a lifetime. I shall concentrate on this aspect, which has already been touched on by the noble Baroness, Lady Faithfull, and try to see just how costly and far-reaching in both human and financial terms the effect of handicap can be.
As my noble friends Lady Loudoun and Lady Kinloss have said, the estimated cost of keeping a handicapped person in care from birth to the age of 65 can be £250,000, and I stress that that is at today's prices. Of course it costs far less where it is possible to keep the handicapped person at home, but it is still expensive. For the State it is expensive in terms of aid, equipment, adaptations, attendance allowance and mobility allowance. For the family, whose costs are not fully offset by those benefits, there are also abnormally high clothing expenses because clothes wear out faster if one uses crutches, calipers or a wheelchair. Even if one's child is so severely handicapped as to be immobile one still must buy dearer clothes because cheap clothes have hard seams which create pressure sores; nylon makes a child sweat more than does the more expensive cotton; and there can be very large laundry bills where incontinence is involved.
A Bristol survey of 103 mothers of mentally or physically handicapped children showed that 43 per cent. said that their children were either singly or doubly incontinent which added greatly to the cost of extra washing, and 37 per cent. of those mothers with incontinent children received no financial help at all. 154 There are also the problems of knowing where to go, as the noble Lord, Lord Belstead, mentioned. In a 1976 study of 255 families with disabled children, the mothers were asked if they knew who to approach for financial help and 30 per cent. of those mothers said they had no idea whom to approach.
Adaptations to the home are often necessary and of 123 families who made modifications to their housing because of their handicapped children, 75 per cent. had completely financed those adaptations themselves, and nearly one-third of those who paid for their own adaptations said they were in financial difficulty because of that. To give some idea of the costs of installations— these prices are for May 1977—the cost of installing a ramp was between £120 and £140 and the cost of an additional bathroom was between £1,800 and £2,400.
What happens to the handicapped child who has been able to live at home but is so severely mentally or physically handicapped that when he grows up he is as an adult unable to cope on his own? If he outlives his parents, he too will have to go into care, which can be a traumatic experience for somebody who has been able to live at home all his life, and the fear of this can create an added strain for the parents and the handicapped person alike. Technology has done much to increase the independence and improve the quality of life for many disabled people. Again, however, it is expensive, and of course there is much brain damage for which, sadly, no technology can compensate.
What of the costs of the handicapped in human terms? Alf Morris coined the expression" the disabled family", and my noble friend on the "mobile bench" beside me has already said today that when one member of a family is disabled the whole family in fact becomes handicapped. In socially and economically deprived families where the: incidence of handicap is high the strain is enormous. If the handicapped child has a disruptive influence, the other children may suffer, and one brave mother in a magazine article recently admitted that she came literally to hate her handicapped child because of the effect it had on the other members of the family.
155 The middle class and upper middle class family suffers too, but for different reasons; there is more feeling of guilt and social embarrassment. This can create a vicious circle; for example, if a child has a speech defect, its emotional condition greatly affects its speech and if the family's anxiety and embarrassment is communicated to the child, his speech in consequence deteriorates and this creates further embarrassment for the family, and so it goes on and on.
What of the handicapped child himself? Cerebral palsy is one of the gravest handicaps from the social point of view. Spastics speak of feeling rejected, not only by society, but also by people of other disabilities. I have a friend who is relatively mildly handicapped by cerebral palsy. She has problems with coordination and, through hard work, what is only a mild speech defect. She has no mental handicap; in fact, she has a very good brain. To illustrate this point I should say that she went to a special school until the age of 15, where there were few facilities and very little was expected of her. Her only saving grace was the travelling library, which she read through avidly, and at 15 she persuaded her family to send her to a normal school. When she arrived she was bottom in everything, except English—thanks to the travelling library—and a year later she was top in all subjects except maths. She subsequently trained as a shorthandtypist, but she encountered enormous prejudice, she said, when she was applying for jobs.
This is a very intelligent girl, with only a mild handicap. What must it be like for those who are more gravely physically handicapped, or who have a mental handicap? This girl says that she took 10 years to accept herself. So what chance had society of accepting her? She feels that very early counselling is essential for the parents and for the child, and that the latter should be taught self-respect at a very early age; but you have to acknowledge and to understand your disability before you can accept it, and only when you have accepted yourself will you be accepted by others.
Happily, much more is being done in this field than when this girl was growing 156 up. But we still have a long way to go in educating those directly involved and, I think, the community in general. As the noble Lord, Lord Belstead, has said, where possible it is preferable and cheaper to enable a handicapped person to live at home. We must give the disabled family all possible assistance with both education and counselling, and practical help to alleviate the strain. A consultant paediatrician who is very experienced in this field, says that there is great need for more community-based care and support. He sees the need for an increase in counselling services for children of pre-school age, and for an increase in assessment centres because early, and I would stress continuous, assessment and advice are vital in minimising the effects of handicap. More social service relief hostels are needed. These are very important and invaluable for providing a short-term stay. Such a hostel gives the family a break. It helps the family in that they can have a holiday with the other, non-disabled, children; or it may simply provide rest and relief from strain for a mother who has been staying up night after night with a child screaming with cerebral irritation.
I think it is important to have more provision of home helps to provide relief in the home. I would remind your Lordships that the noble Lord, Lord Belstead, said that reduction in demand also means better services for those who need them. Being able to leave the handicapped child for a brief, short-term stay may mean the difference between being able to keep him in the family and putting him into permanent care. So it is extremely important to have this. Some mothers feel reluctant to do this because they feel that if they make use of shortterm care it may lead to the child being taken permanently into care. I feel that more advice and reassurance is needed on this subject to make the mother realise that it is her right to be able to be away from the child for a time, as it is with any mother of any child. Thus, we may lessen the feelings of guilt and fear.
All this stress, unhappiness, and wear and tear on the family has, I believe, very far-reaching and, I suggest, ultimately very expensive effects. May I just briefly give your Lordships a few sets of figures? 157 I will not bore your Lordships for long, because I know the hour is very late. These are results from a 1976 survey of 255 families, all with severely mentally or physically handicapped children. Half the mothers reported that their own social activities were severely curtailed. Sixtythree per cent. reported that they had problems with their other children, particularly interference with homework when the handicapped child was around; problems with their own possessions; problems with entertaining their friends; and problems of jealousy. Forty-one per cent. had problems doing their housework. Only 14 per cent. of mothers of handicapped children were without symptoms of stress, compared with 39 per cent. of a sample of Bristol housewives.
In a 1967 study of behaviour problems among children with cerebral palsy by Maureen Oswin it was shown that the incidence of breakdowns and emotional stress among the parents of cerebral palsy children is high. Among 26 of the children whose families were studied, there were five cases of mental breakdown in one or other of the parents; five of the families could not manage their child at home; eight of the marriages were broken; and one child had no parents at all, being a foundling child.
I should like to ask one or two questions of the noble Baroness who is to reply for the Government—and I must say that I have not given her notice of these questions because they occurred to me only when I was thinking in detail over the week-end, but I would be very grateful if she would let me know the answers later. I wonder whether there are any figures for the percentage of nervous breakdowns of mothers of disabled families in relation to the national average. Similarly, the percentage of broken homes; and the percentage of children who are disturbed or delinquent who have a handicapped child in the family. Are these figures known; and, if not, should they not be discovered? Because they might give us a fuller picture of how wide the effects of handicap spread.
If they are higher than the national average, when the costs to the State in terms of hospital care for nervous breakdowns; of social security for the 158 abandoned parent who has to leave work to look after the family, the children; or of keeping other children in care because of the break-up of the marriage or because of disturbed or disruptive children—when these costs are added to the scales, the total cost of handicap might become much heavier than that of simply caring for the disabled people themselves. The effects may continue into the next generation. If the normal children of these homes are disturbed, how stable will their future families be? Surely, research into cause and prevention of handicap is of prime importance.
As a Roman Catholic, I think it is very relevant to emphasise that we are in no way advocating abortion. In the case of cerebral palsy, it cannot be detected before birth, anyway. We must identify mothers at risk and take all possible steps to minimise brain damage, or in many cases avert it altogether. The aim is to avoid impairment, not to prevent birth. A paediatrician on the radio at the weekend said that Britain's record in his field used to be good in relation to Europe, and that now we are not in the top ten. Are we to continue to lag behind? With research we can go some way to prevent other handicaps and perhaps to eliminate cerebral palsy altogether. That is an ambition for the future, but not, I think, an idle dream. But from the French and the Swedish example we know that it is within our power to prevent up to 40 per cent. of cerebral palsy births now. There are over 2,000 cerebral palsy births a year. That in effect means that annually 800 children are born handicapped unnecessarily. I would ask your Lordships: In both human and financial terms, can we afford to ignore the evidence before us?
§ 10.8 p.m.
§ Baroness LLEWELYN-DAVIES of HASTOE
My Lords, it is perfectly clear from the reception that my noble friend Lord Parry has had that we wish to give him more than the simple courteous gratitude for asking this Question. Our gratitude is really very deep to him for his most powerful and moving speech, and for giving us this opportunity to look at this question. It is indeed right for noble Lords to press the Government to outstanding 159 effort on this most important matter—something potentially so tragic, and one with the greatest appeal to our deepest compassionate instincts. It has been a most important and moving debate. We all of us, I think, have our particular priorities on social and health questions, and, as a former board member of both paediatric and mental hospitals, this comes very high with me.
I must say that I am going to find it extremely difficult to answer all the questions which have been put to me tonight, but I should like to begin by saying that of course the Government have a great deal of positive thinking and positive action to report. I will try to answer the points which have been put to me as well as I can, of some of which noble Lords have been kind enough to give me notice in advance.
The noble Lord, Lord Belstead, if I may start with him, has given me notice of most of his points. I was glad that he mentioned the Court report. I have known and admired the work of Professor Court at Newcastle for many years. His report is far-reaching and, in my view, a most disturbing document. My right honourable friend the Secretary of State announced the Government's decisions on the report's recommendations last January and they have been sent out in a circular to health and local authorities for their guidance. Among other things, the circular specially asked them, through their joint consultative committees, to organise district handicap teams for the assessment and support of severely handicapped children and their families. I hope that this will meet some of the reaching-out points which were made, many of the points made by the noble Baroness, Lady Darcy de Knayth, and many of the points that other noble Lords have made.
For the future, there will be further guidance to the authorities on prevention in the child health services, which is so important. We accept the need for a basic programme of health surveillance for all children from birth right through school age and onwards; and we are trying everything we know to encourage its development. Of course, as everybody knows, this is not very easy. On the 160 question of education it is quite easy to take a horse, or even a foal, to water but very difficult to make it drink Nevertheless, the Government are trying with all the effort they can bring to bear to get this across.
The noble Lord stressed the importance of professional training. In this, we very much agree with him and we are holding discussions with all the relevant nursing and medical bodies. So no one speaking for the Government would try to be complacent about this. We are improving all the time in the light of further knowledge. One of the things which concern me most is that noble Lords are undoubtedly right when they say that the rates of infant and perinatal mortality vary so widely in different parts of the country. The social and political implications of this are a particular worry for us on these Benches. We are all agreed, I think, on all sides of the House that at least part of the reason for this is a failure in communications and contact between parents or potential parents and the services available to them.
I am very hopeful that the follow-up to the recent conference that we had in reaching the consumer in the ante-natal and child health services will help tackle this problem. As noble Lords know, and as I was saying, education is always difficult, but our hope for a general programme is not just a pious hope. We have had close liaison between the health and education authorities for many years and the health visitors, of course, provide an important link between the services. We are continuing actively to give priority to health education.
I very much take the noble Lord's point about the necessity for a single agency. This is very difficult to arrange. There are all sorts of different people who can be approached: school nurses, health visitors, social workers, youth advisory clinics—and I particularly put faith in those—but there is a long way to go. I do not deny it for a moment. I would not want anybody to think that the Government are not aware of it.
I am grateful to the noble Lord for raising the Quirk report. I can give a positive success story here. This recommended a figure of 2,500 speech therapists to be employed in the NHS within 161 20 years and, therefore, an increase in the number of training places at schools to 350 places by 1982—that is, per annum. Your Lordships will be glad to know that this figure has already been exceeded. Since 1972, when the report was published, the number of speech therapists employed has risen from about 800 whole-time equivalents to about 1,430. That is something hopeful. Of course, we realise that there are still widespread shortages and an ever-increasing demand. Officials are discussing with authorities means to increase the output of physiotherapy schools and are looking at the manpower requirements of those concerned with occupational therapy, both of which the noble Lord inquired about.
One or two noble Lords referred to special schools and the position in mental handicap hospitals. Of course, we place a very high priority on the replacement or modernisation of hospital special schools. Your Lordships know, I think, that the special education building programme unfortunately had to be severely curtailed in our time of economic distress, and I must honestly tell the noble Lord that there has been no growth in real terms over the last three years; but he will be glad to know that for 1978–79 roughly £11 million has been made available for all special school projects, of which about £1.5 million is for the replacement or improvement of hospital special schools.
Best of all, for me, the number of children under 15 in such hospitals has fallen by over one-third. This is really heartening, especially for those of us used to working in these hospitals. In the old days, one of the most distressing things that happened to me was visiting children in mental hospitals in one's ordinary clothes and being crowded round by the children, holding one's clothes and calling out "Mummy!" This is something which is really unbearable to go through, and I am so glad that the number of children in these hospitals is decreasing. It really is good to know that this is true.
In this connection, of course, I should like to say that we have taken special note of what the noble Baroness, Lady Darcy de Knayth, said about the difficulties of children who are at home. We know there are these difficulties and that there is a need for real help as well as advice. We hope there will be progress 162 in the future. Of course, there are still children in hospital for whom alternative forms of care are necessary and would be very much more appropriate. But my right honourable friend is reviewing, jointly with health and social services, the needs of these children and, above all, is setting dates from which no further inappropriate hospital admissions will take place. That is of vital importance.
Because I understand the general anxiety inside as well as outside your Lordships' House, I should like to outline something of what the Government's approach has been, although I know that many of your Lordships are aware of it, and what it will be. Noble Lords will know that we have already given substantial publicity to the connection between perinatal mortality and perinatal morbidity in various publications—just to name one or two: Everybody's Business in 1971 and, in much greater depth last year, Reducing the Risk, which I commend to your Lordships. We all accept that the medical background to the connection is that many factors are responsible for perinatal mortality and also for morbidity. I will not go into a list but there are such things as hypoxia (poor oxygen for the baby), birth trauma, congenital defects, and low birth weight, as my noble friend specifically mentioned.
As many noble Lords, and most movingly my noble friend, have said, medical findings are not the only connection. An area with a high perinatal mortality rate is also likely to have a high incidence of perinatal morbidity. In a most thoughtful speech, if I may say so, the noble Baroness, Lady Faithful], surveyed the whole question of community care and, in particular, midwives. She quoted what had been said by the noble Baroness, Lady Robson. I think it was her suggestion that if mere money was spent on maternity services there would be a reduction of the number of handicapped children. But it is not just a matter of increasing funds for paternity services alone. It is not only the quality of health services provided but also, as we all know, environmental, social and nutritional factors which are equally important. That, again, has been brought out by my noble friend Lord Parry.
On the midwifery situation, I think it might be easier if perhaps we had a word 163 outside, because it really is very complicated. But we are very well aware of it, and a lot of the community services do in fact visit outside, and we can talk about that perhaps in more detail.
In connection with environmental and social factors being of such importance, I should particularly like to emphasise that the White Paper, Policy for Inner Cities, published by my right honourable friend the Minister for Housing, stresses that these programmes are specially designed with full recognition of the interrelationship between social conditions and health standards. That is most important, and should have far-reaching effects in these particularly deprived areas. I shall bring my noble friend's most interesting comments on rural areas to the particular attention of my right honourable friend the Secretary of State.
Those of us who have been in this kind of work over the years have always perceived this inter-relationship, but there is now a general expert recognition of it and the Government are specifically directing their policies towards it. This is positive. Of course, this involves not only the professions but the voluntary organisations, about which we have quite rightly heard such a lot tonight. I echo everything that my noble friend has said about the Spastics Society and about other voluntary organisations, and we are doing everything we can to encourage them. I must say, on a personal note, that when I was doing this work myself, 15 or 20 years ago, I could have done with less praise and more money. But I must add that Government grants now add up to a very considerable sum, details of which I can, of course, send to noble Lords if they would like them.
It has nowadays become almost platitudinous, though it used not to be, to say that where maternal and child health are concerned the mother herself is all important. As my noble friend Lord Parry pointed out, her personal actions, such as when exactly she goes to ask for care, the use she makes of the health services for herself and her baby, even her smoking habits and, of course, the psychological approach of the very young mother, are all-important for the baby. That was echoed by my noble friend Lord Lovell-Davis, the noble Lady, Lady 164 Kinloss, and others. The Government have made great efforts to stimulate discussion and action on these problems. We know that the women most in need are the very ones who are not always able to use the available facilities.
I should just like to refer to our pamphlet Reducing the Risk, because it is a really good pamphlet and is concerned entirely with safer pregnancy and childbirth, and with identifying ways in which the chance of perinatal mortality and morbidity and associated handicaps may be reduced. We know that it has already helped to focus attention on some of the main issues. Last month we organised a conference with the Child Poverty Action Group on these vital issues, particularly on how to reach women in need and to persuade them to attend clinics as early as possible. That, as we all know, is the really difficult problem. Some very useful ideas arose and we are now considering what best follow-up action there should be.
I will bring the special attention of the Department of Health to my noble friend's very thoughtful comments on the need for evening and weekend clinics. This is not always as easy as it looks, because if a mother goes to an evening clinic she often has to be referred, especially if she has special difficulties, to a day clinic where more sophisticated equipment is available. So it is not as easy as it looks, but the suggestion is undoubtedly valuable. My noble friend Lord Lovell-Davis referred to the fact that we need friendlier clinics. Yes, my Lords, we are very much aware of this, too, and we are doing all we can to help. I particularly liked his reference to child minding. I think that that is of special importance. We have an expert group actually looking into this matter at the moment.
My noble friend Lord Lovell-Davis asked me about cerebral palsy, as did the noble Baroness, Lady Darcy de Knayth. We are going into this in depth all the time. We accept the tragedies that it causes to the patient and, above all, to the family, but we know that where mothers attend early and take advantage of the full facilities of obstetric neo-natal care the figures of handicaps are falling and, what is important, falling significantly. Officials 165 have had preliminary discussions with the voluntary organisations, and we are trying to co-ordinate still further effort. But I must stress that in this field nothing is simple and that specific targets, whether in years or in numbers, may not be the right approach. Nevertheless, we are taking it very seriously.
I completely accept noble Lords' concern with this and with comparisons with other countries, but in general international comparisons can be very misleading because of the difficulty of matching one country's methods of defining and collecting statistics with another's and because of the very wide range of cultural, environmental and other factors which contribute to the different results. For example, many noble Lords have rightly referred to the French programme which has caused tremendous interest everywhere. As it is rather late at night, may I explain our view in rather simple language, and shortly. Our rate of reduction of perinatal mortality has been consistently steady. The French had a commendably rapid fall between 1971 and 1974. The figures show that they have levelled off, and they are now of the same order as ours. However, we welcome knowledge from every source, and advice of every kind, and rejoice when any success is reported from any country.
At this hour of the night I shall not go too deeply into the question of the maternity book. It is a fascinating question. It does not in itself resolve the problem of non-attendance at clinics. Only about 10 per cent. of people did not take up the first examination, although they forfeited £40 by so doing. So it is not a complete answer. We are interested in it, however. We have a maternity co-operation card which a mother can carry with her, and many health authorities use it. We are prepared to learn about this from every country and every organisation where we can.
Perhaps the most important practical, as opposed to educational, development has been the Government's policy of concentrating births in well-equipped, consultant units of district general hospitals where the full range of obstetric and paediatric facilities is available. That is a point which the Spastics Society has rightly emphasized. The noble Baroness, Lady Masham, gave a very clear descrip 166 tion of this. It is not a popular view to put forward, because inevitably it means closing down isolated, ill-equipped and under-used units. That is not popular. Sometimes we are reproached for a too great an economy approach in the National Health Service. However, this is a case where greater economy and improved services go hand in hand—that is, the overall standards of care for new-born babies and better prospects for babies who need special and immediate attention.
If I can very briefly turn to the community, the noble Countess, Lady Loudoun, who I see has gone, raised the question of the falling number of community midwives. Again I could go into that question in detail, but as the noble Countess is not here perhaps I may do so when she is. Her figures do not reflect the true position, but I can explain to her later why that is so.
All noble Lords have mentioned the overwhelming importance of the question of screening during pregnancy. Our pamphlet, Reducing the Risk, recommended that there were strong arguments for giving women at risk of having babies with Down's Syndrome, which we used to call Mongolism, the opportunity of having amniocentesis, which simply means withdrawing some of the fluid surrounding the baby. Also, in answer to the noble Baroness, Lady Darcy de Knayth, the Government have underlined their commitment to the introduction of a prenatal screening service for spina bifida and other neural tube defects as soon as its safety and effectiveness can be assured. This is most important and we have a Working Group under Sir Douglas Black looking into these problems, and your Lordships will be glad to know that their first meeting will be in a fortnight's time.
We have emphasised the importance of special care for certain new-born babies for a very long time, and we can claim that provision for their effective management has grown, particularly in recent years. No one attempts to minimise the problems that face us all, but the Department has taken the whole subject very responsibly and this is shown by its continued guidance to all the authorities concerned. The noble Baroness, Lady Darcy de Knayth, covered an immense canvas and as she said that I could answer 167 her more detailed questions by correspondence, I will do so. It is also very clear from the debate that noble Lords are particularly concerned about research. At this hour I will not go into details of our research projects, but I would mention that we have agreed to finance the establishment of a national perinatal epidemiology unit at Oxford University, and that will look at some of the questions raised by the noble Baroness, Lady Masham of Ilton.
Over the years we have paid close attention to the connection between perinatal mortality and morbidity and their close association with mental and physical handicap, and I hope I have shown that we have taken great steps forward, not only in giving information to those most concerned. In this connection, I was most taken with the suggestion made by my noble friend Lord Lovell-Davis about using specific programmes on television, and I will bring that to the attention of my right honourable friend We have also made major efforts in encouraging health authorities to rationalise and improve their services for mothers and babies.
My Lords, we cannot be complacent; we must press on with our efforts, including research, and must by every means in our power effectively use the services which exist now and which we know can save life and prevent handicapped babies. No effort can possibly be too great, or perhaps even be considered adequate, when we relate it to the physical and mental anguish of families; but I know the House can be assured of our deep, active and continuing concern.