Priority of priorities (1978)

At the beginning of last year, the government published this report known as the court report. It made depressing reading. Its central theme concerned the appalling shortcomings in the care that we provide for our children and above all for our babies. This is a graph of infant mortality, babies that die before they are one year old. In 1950, Britain compared favorably with many advanced nations. Britain now has one of the highest rates for infant mortality in the western world. Temporary terms infant mortality is a holocaust equal to all the deaths in 24 years of life. My wife started having labor pains about 2:00. I drove her to the hospital. GP said that he was worried about the baby being slightly small for dates, but the consultant at the hospital seemed to think there's nothing to worry about. It all happened very quickly. In fact, by the time we got my wife to the delivery room, she was in advanced state of labor. It all went very quiet. We couldn't see anything because Steven was shielded from us all the time. We found out later that our doctor had been trying to put a tube down Steven's throat. We then heard the doctor say to the nurse, "What do you mean it isn't working? Surely there's another one outside." The nurse went out with the tanks she had been playing with and came back a few seconds later with some more. Another GP from the practice followed her in. The nurse carried on trying to get the new equipment working while the doctors continued shielding Steven from us. I'm not sure exactly when, but one of the nurses disappeared and the two doctors continued to fiddle and one of them said, "I've had trouble getting the tube down." It was then the third doctor came rushing in. She seemed to take charge of what was going on. Eventually, they got Steven breathing, but my son had suffered severe brain damage. All we know is that the answer of what went wrong is in the case notes. Um and that if we had an expert uh then we might find out. But it's a case of we can't afford to buy an expert to study the case notes. So we won't find out. And that's the only way it can be done because no one is going to tell us. I think there should be greater emphasis to go back and look and see what you've done wrong. In my short time here, I've been in contact with at least three mothers who've got handicapped children. And um just out of interest, we looked back at their abstetric history and they there is an error. It's blatantly obvious. Steel was severely [ __ ] He wasn't capable of doing very much by himself out of his own brain as it were. But the motivation was there. We gather anyway that he would have been pretty bright. I mean, sort of intelligent if this hadn't occurred because all the time he was wanting to improve. I don't think there's much point in saying that you're doing better obstetrics today if there's no feedback as to what you're doing. you know, the child that dies is a is, you know, a tragedy, but he's dead and he's gone. But the child that survives and should have died um because of his gross problems, he's a disaster. So, he he's an absolute disaster. He's there as a reminder to mother and father for the rest of their lives. And often um the mother and father wonder what they've done wrong. And I just wonder what somebody else has perhaps done wrong. when you exercised him, if he did an exercise properly, such as trying to lift his head up, it would always give you a smile or laugh. And uh, you know, it was it was pretty choking. Steven Gross died 2 weeks before his first birthday. He was one of 18,000 children who in 1977 died before they were a year old. Yet, this holocaust, as the court report calls it, has another tragic consequence. Because for every child that dies, two survive handicapped and often severely for the rest of their lives. That's 36,000 damaged children each year. And for every child, a family, a father and a mother. I could gradually hear his voice building up. And he said, "She has this thing called tubroserosis, which means that she's going to be severely mentally [ __ ] We can't even give you a life expectancy. And we literally used to cling to each other at night and think whatever's going to happen next. And we used to have only she would die. It's an easy way out. And in fact, after 2 months of um what do you call it? Tube feeding. She was tube fed asleep 24 hours. And it was and I and I just thought, well, she could go on like this forever. Um, somehow Victoria came out of it and started to eat and the whole process started all over again. She used to have screaming attacks of rage. That's what they used to call it. Um, I think it was frustration. I think she was in pain and she the only way that she could let us know that she wasn't happy was to scream and to scream to such an extent nothing and nobody could stop her. Um we weren't sleeping. We hadn't I hadn't slept uh for about 2 and 1/2 years. My husband came to the conclusion before I did that he just couldn't cope anymore. He couldn't cope with the screaming. He couldn't cope with me who was I was like an all a robot just coping with dinners and nursing and getting the kids to school. Um I didn't have time to talk to him or even think of him as a person. And all the time Tail's problems were getting worse. We found she was running away from school when and finally my husband said to me, "You have to make the choice. We just cannot go on like this. It's either me and Tara or Victoria. And it was such a a shock to think that life must be really so bad. He's asking me to decide. And somehow we made a decision. I don't regret it now. I knew that we just couldn't survive with her at home. I sometimes wonder what she thinks if she thinks. The terrific feeling is that can this not be prevented? Can we not avoid this kind of situation? avoid having so many children who are no long are not not able to enjoy the joys of childhood growing up running about playing children who can't communicate except in grunts perhaps or in rocking perhaps not even there it isn't always a genetic cause in fact the genetic cause is a minority in this particular group of children better uh care during uh pregnancy, more protection, um better perinatal care could reduce the incidence and it could reduce it dramatically. We must think of the unborn children, the children who are yet to come, the children who might end up like this unless we can improve the service that we offer. The service has failed and failed dramatically. Half the children in this ward need not have been handicapped. It's not always easy to be absolutely sure what causes handicaps like these, but there's overwhelming evidence that in the great majority of the cases, their handicap was not caused by some unspeakable mystery deep in the parents past, nor by some unknown genetic mutation. This is the largest study ever carried out on the origins of handicap. Genetic abnormalities account for only onethird of these conditions. Almost half the total of handicapped babies fall into the first two categories. They're born too soon and they are also too small and are therefore more likely to be [ __ ] epileptic, autistic, blind, deaf, and mentally handicapped. Paricardial air because you've got air right up here. Malcolm Chisik runs the intensive care unit at St. Mary's Manchester. In this vital field, the care of the newborn baby at risk. He is one of only nine full-time consultants in this country. I think we're going to sort of sit back and play it at low key. At present, we know for sure that 70% for example of all neonatal deaths. That means deaths in the first four weeks of life are occur in babies who are of low birth weight. Babies who weigh less than say 2.5 kg. The vast majority of those babies are in fact babies that have been born prematurely. Um, prominence amongst the conditions that premature babies get is a condition called respiratory distress syndrome. This is a lung disease. It's caused by immaturity of the lungs. And indeed, that is probably the single most common cause of death in the first week of life. And it's reasonable to suppose that poorly treated respiratory distress or suboptimally treated, whatever you'd like to call it, is a potent cause of handicap. You see, the real issue at stake is the management of hypoxmia as a result of respiratory distress. You see, it's treated by oxygen therapy. Oxygen is a drug that ought to be given in a controlled sort of way. I mean if a baby's um brain is not being fed with sufficient oxygen then that baby might die or the baby might become handicapped and that handicap may or may not be a permanent handicap. But we can sample small volumes of blood from the baby's main artery and measure not only the concentration of oxygen but also the concentration of carbon dioxide and also the level of acidity in the baby's blood. And then we we give the baby oxygen according to the baby's needs. Um this is an oxygen analyzer. It's a simple instrument. It's not expensive. The head of the instrument lies close to the baby's mouth. And this instrument samples the concentration of oxygen in the air that the baby's breathing. And you can see now that the baby's breathing about 30% oxygen. So we adjust the dose of oxygen according um to the baby's um arterial oxygen level. And this is the only way that one should really be giving oxygen to premature babies. Yet despite the acute need for these simple techniques, this government survey of special care baby units revealed that in only eight of them with us equipped to measure the amount of our babies were breathing. To cope with this, St. Mary's have developed a flying squad to rescue dangerously ill babies who might die in other poorly equipped units. However, this service is only one of a handful in Britain. This is the incubator in fact that we use um when we go out to collect ill babies from other maternity hospitals. We've modified it in some ways. Let me explain to you. Um the portable incubator has built into it a mechanical ventilator. So those babies that are really ill and require um mechanical ventilation that means having their breathing taken over uh we can do this and we can um connect them to this machine in the ambulance on the way back to St. Mary's Hospital. Um we've built onto it an oscilloscope to measure the baby's um heart rate continuously during the journey. And um this instrument was devised uh by us for our medical by our medical physics department. It enables us to measure continuously the baby's skin temperature and also to monitor the amount of oxygen the baby is breathing during the journey back to St. Mary's. And of course at the bottom we have various resuscitation equipment. So um this is a very important piece of equipment for going out and collecting ill babies born at other maternity hospitals. It enables us to bring them back safely. But you know mortality mortality figures isn't the only thing. If we look at the experience of other hospitals that have been going longer than us and the one the hospitals that sort of come to mind are the Hammersmith Hospital in London and University College Hospital also in London. They've published their results um and we've got some information about the risk of subsequent handicap in babies that survive. And we know that units like that um quite rightly boast that the incidence of significant handicap is in fact quite small following intensive care. So it's not just a question of babies surviving intensive care only to become handicapped later on in life. In fact, the evidence is all the other way. Good intensive care ought to prevent handicap. Good intensive care ought to prevent handicap. But we simply haven't spent enough money. So there aren't enough trained staff. There isn't enough equipment or even the flying squads to pick up very ill babies and take them in safety to the few intensive care units that do exist. Each year, thousands of babies die or are permanently handicapped because of a lack of proper intensive care during the first few hours of life. Yet the intensive care unit is not the answer. The crisis began not with the baby but with the mother not after birth but before birth in pregnancy. There are many factors um which generate the need for intensive care in the newborn period. Um what we do know is that all these factors uh revolve around antiatal events events that happened before the baby was born. In other words, a baby suddenly doesn't become ill in the first few weeks of life as a result of a an acquired disease. The baby becomes ill as a result of factors operating in the womb. And I'm afraid that in this country we have been a little slow um to put this bit of knowledge into practice. [Music] It is only here in the hospital antiatal clinic that mothers can best protect themselves against their babies dying or being born handicapped. It's here that the staff can discover if a pregnancy is at risk early enough to take the action needed. Any rotation, any damage to your pelvis, anything like that? The mother's first visit to the hospital antiatal clinic should take place not later than the 16th week of pregnancy. Mothers who attend late are five times more likely to lose their baby than those who attend early in pregnancy. Do you smoke? That's good, isn't it? We think if girls smoke that, in fact, we know that if mothers smoke, the babies are going to be on average a little smaller. The key figure is perinatal mortality. Babies who die between the seventh month of pregnancy and the first week of life. In France, Sweden, and Finland, all countries with significantly lower perinatal mortality rates than ours, between 85% and 95% of women attend for antiatal care before the 16th week. You see, very few people realize that the failure to take up antiatal services may have the direct effect of producing handicap. This isn't understood. Looking after a mother during when she's pregnant is a continuous process. She should be looked after the whole time. And if the services that she obtains or elects to to use are poor in the beginning, we may very well end up with serious handicap or even death. This is the inner city of Liverpool. Here at best, only half those women who become pregnant each year report for antiatal care by the 16th week, and the consequences are grim. 3/4 of those young mothers whose pregnancies end in perinatal death have failed to go to the antiatal clinic before 16 weeks. These tragedies make up the figures. Liverpool has one of the highest perinatal mortality rates in Britain. Yes, it's not surprising in fact because it's a very good illustration of the general problems that there are here concerning poverty, a high rate of unemployment, a large number of women working, a large number of single parents. um a very backward community uh service, the lack of health centers, GPS working from uh in single practice from lockup surgeries. There's no appointment system. There's very little room in the waiting room just for say seven or eight people and you get mothers and babies queuing outside. I mean, women aren't going to go. I wouldn't go, would you? Faced with that problem and short of funds, Liverpool decided to put all its antiatal care at the city's main maternity hospital. But solving one problem created another for the working mother. Well, a woman, for instance, u may well have had to take a day off work without pay. She may have had to get somebody to mine the children for she thinks about an hour and then it ends up being two, three, four hours. She may well have had to get a taxi in because the hospital is not very close. the bus services are not very good. Um and then when she gets there, she has to wait a long while. Um the consultant doesn't speak to her directly, speaks to the students, you know, over her head. She feels very excluded from the consultation as treated as a number rather than as a person. And uh it's just the last straw for her really. The complaints, whether they're justified or not, is very difficult for me to ascertain. But they all have this feeling that the rather upper middleclass male doctor is either talking down to or uh despises the lower social working girl. Now, as I say, that may be an entire misconception of the situation, but that is what is felt by the mothers. And it doesn't it doesn't matter whether they're right or wrong. If they feel this, I believe they will be reluctant to get the help that I'm quite clear the obstitricians wish and are able to give. So yes, I think there's a a bridge to be crossed here, a communication gap. In an effort to discover for ourselves what mothers felt about the treatment they received at the hospital antiatal clinic, we asked to film in the outpatients department, but the authorities said we couldn't. If mothers can't easily get to the clinic and feel alienated by an impersonal system, then they don't readily go. So, it follows that less of them make it by the 16th week. What about the community midwife whose job it is to find such mothers and help them? How are they coping? We approached the hospital authorities once again and asked if we could talk to a community midwife. Once again, they said no. The maternity services in Liverpool are under attack. They feel threatened and inevitably they've adopted a siege mentality. But that won't stop babies dying. The frightening mortality rates will remain until the antiatal service reaches the mothers. And in a city filled with mothers who work, until the authorities provide antiatal care, not only more widely, but in the evenings and at weekends, until in fact the health service serves. I'm quite clear if you ask staff in general, do they want a change? Most people will say no thank you very much and as I say this is a feature of this country that we are very concerned to consult with staff uh and see whether they like it and very often sometime well not very often but sometimes the interests of staff are not the interests of patients. We don't put nearly enough um emphasis on a healthy pregnancy and the nine months from conception to birth and that a lot of women um in Liverpool who very much need that kind of support, that kind of encouragement are not getting very much more of it now than they were perhaps 20 years ago. There are over 30 other towns and cities that share Liverpool's problems. All of them with high perinatal mortality rates and almost all of them in the Northeast, Northwest, and Midlands. Traditionally, those areas least able to cope. Areas which have been starved of medical resources for years. Statistics illustrate this unpalatable fact. Twice as many children of unskilled workers die in the first month of life as the children of professional workers. And the gap between the social classes has been widening in this respect for 25 years. In these towns and cities, six out of every 100 babies die or are handicapped for life. Yet even limited resources properly managed can have an impact. This is the London burough of Islington. Its problems are like those of Liverpool. Poor housing, high unemployment, much poverty. The maternity hospitals that serve the burough are scattered, difficult to reach by public transport. Islington is an area, one of the areas in central London where there is an enormous amount of social deprivation. We're very fortunate that we've got very good community-based midwives, very good community- based health visitors. Several of the practices have their own health visitors and a few of them have their own midwives. And so we're able to follow up these patients very very carefully. So carefully, in fact, that almost all Islington's mothers, having already visited their GP twice, are booked in at the hospital antiatal clinic by 16 weeks. And the key to Islington success are the community midwives who stay with the mother from the first antiatal visit to the GP's surgery. The mother, as soon as she's pregnant, will go to the GP to have the pregnancy confirmed, which I I imagine most mothers would do all over the country. um have the pregnancy test and then immediately he gives them an appointment within a week or two for my antiatal clinic. So instead of being referred to the hospital where they might have to wait for quite a long time for an appointment because some of the hospitals are very busy um they they come to the his anti clinic with the midwife and um that's usually very early on. It can be at six or seven weeks. How's that? 99. That's the same as last time. That's good. By the time she comes to term, she'll have visited us and the hospital about 12 to 16 times in all. And when she goes into labor, she calls her midwife. And if she's booked for the GP unit, the midwife will take her into hospital. On the whole, the same midwife will stay with her. We'll deliver her and we'll probably look after her afterwards. It's much more satisfying to have continuity. It's much you feel much safer yourself because you know your mothers and you know where you are and you're much more likely to see things going wrong and likewise the mother is much more confident. Do you feel it kicking mostly that side or it is all over? All over. Yes. I think it's a bit slightly back to back with him. It's an inconvenient truth that the health service too easily adopts the middle class assumption that people know what they need and have the confidence to go and get it. But many mothers don't. And it's those mothers and their children who will suffer. Islington knows this. And so the community midwives spend most of their time home visiting. This is a mother who's been from one lot of bad housing to the next. She has been a battered wife. At the moment she's going through divorce proceedings with her husband. Typical of a mother at risk in bad social conditions with bad housing conditions. She went into premature labor at 35 weeks. Well, everyone knows that premature labor is one of the riskiest things of all. You're most likely to produce a handicapped child from premature labor. It's the ultimate aim of antiatal care is to prevent prematurity. Luckily, the premature labor was prevented and she went into spontaneous labor at term and was delivered by her community midwife and came home after I was 3 days. The house has been pretty cold. Yeah. Yeah. But I have to keep the cooker on in here as well as the fire to keep her warm. You're having the cooker on all day, is it? Yeah. I have to have the cooker on all day. The temperature was there one time. So move the fire to get the room warmer. So the problem now is that the house was very cold and she is having a job paying all her bills because she's on social security. Heating is absolutely vital in the first days of life. If a baby gets cold in the first week, it's tremendously at risk. Your social work. Yeah. Electric heater. Yeah. Fan heater because the baby temperature was low taken. So they allowed the fan heater and sterilizing equipment. Spend money at mother. Yeah. Um you'll have to give her a little note to take to mother care saying you authorize her to spend the money for you. As long as she can get it. I like that. Some people might suggest one was sort of helping too much, but I don't think you can help these people too much. They're they're always going to be a risk and always going to need a certain amount of support. And I think it's I think it's time and energy well spent because you're um getting the baby through those first vital weeks when it's so much at risk and later on it's going to be able to stand on its own two feet so much better. The work done by the community midwives in Islington has helped give this inner city burough almost the lowest perinatal mortality rate in Britain, exactly half that of Liverpool. And yet there is rationalization, a government's euphemism for cutting the health service to save our money. And they have cut by almost a half the number of community midwives in Britain. Islington has been trying to fight such policies, resisting this rationalization. But there are doctors here who fear they are losing. We have plans. We've put in an enormous amount of work in hoping to build a purpose-built unit, a central unit for obstetrics in Islington. We've just recently learned that because of lack of finance, this proposal has been turned down. And I think this is an absolute tragedy. Um, many of my colleagues feel like this. Well, it's a tragedy in that we want to improve the antiatal service. We want to decrease the perinatal mortality rate unless one has the money, equipment, and staffing for the newer antiatal screening methods. We are not going to advance. We're going to regress. This is not only happening in Islington, it's happening throughout the whole of the country. And um as we know we we hear complaints from all all parts of the country about the appalling situation whereby obstetric services are being cut back. Hansard July the 25th 1977 Mr. Carter Jones asked the Minister for Health if he will allocate specific funds to health authorities to implement programs for improved perinatal care. The minister's answer was simple. No. In fact, a recent government white paper concluded that the maternity services were an outstanding case of a service that was too generously treated and progressive cuts are now planned for the next 5 years. If it wasn't so serious, you know, you could burst out laughing at the folly of the replies I've been getting saying that we'll wait for this report and that report. Now since 1945 there must be 30 odd reports or documents which have come out in the UK alone saying that good peratal care can prevent handicap and all we should be doing is churning out report after report after report. It really is about time that somebody acted on them. That's all I'm saying. And the numbers involved if we compare them with the Swedish figures are that there are 4,000 babies who die in this country unnecessarily every year. And there are 10,000 kids born with babies born with a disability that they ought not to have had. This is purely by making comparison between the rates in Sweden and the rates here. And if it's good enough for Sweden, it should be good enough for us. Since the oil crisis, phrases like cost effectiveness and revenue consequences have become part of the language of the planners in the National Health Service, high finance governing life and death. Nevertheless, consider handicap in these terms. This list, which we showed earlier, has another significance. It's part of the information used to start a national campaign in France 10 years ago. The campaign initiated not by the Ministry of Health, but by the French Treasury. They had done their sums and there was little argument. It was a matter of cost to the economy. Handicaps cost money. Money that could be saved. Rather than paying this price indefinitely, the French made the prevention of handicap the priority of priorities. They used the knowledge they already had. They organized well and above all they had leadership from government. The result was dramatic. From an infant's mortality rate 20% higher than ours in 1967, 10 years later it was 25% lower. And within four years, the program had paid for itself in lives saved from handicap. [Music] It's not easy to bear a large ward in a hospital for the mentally handicapped. The sense of waste is overwhelming. Yet for many of the children and adults who sit out their lives in these wards, it need not have been so. And then the sense of loss turns to outrage, for we have the knowledge to stop it. In Sweden, there are proportionately only half as many [ __ ] children as in this country. That simple fact is an indictment of a national failure, a tragic lack of priorities. It's in the nature of governments to solve simple problems and to hope that more difficult ones will take care of themselves. This has happened and at a terrible cost to many thousands of families.