Question for Short Debate
My Lords, I hope that this Question today, which refers specifically to cerebral palsy, will highlight the issues which are directly relevant to prevention of this condition. It is often said by Members in their opening remarks, “This debate is long overdue”, when introducing a topic close to their hearts. However, the paramount issues of health and prevention have been repeatedly raised since the Black report in 1980, the Winterton Select Committee on maternity services in 1990 and the Wanless report in 2002. It is therefore all the more astonishing that constructive action to reduce cerebral palsy's prevalence remains overdue.
Our duty to act has been intensified since the Little Foundation funded a European-wide programme revealing significant results, the outcome of which was that, despite popular perceptions, this condition is preventable. I should at this point declare an interest as president and trustee of the Little Foundation. Although it is widely believed that cerebral palsy results from obstetric complications, the research undertaken by the Little Foundation indicated that infection and poor maternal foetal nutrition before birth significantly increase the risk of damage to the brain's development. There are startling statistics for everyone to see; for example, cerebral palsy costs the National Health Service a staggering £4 billion per year, with 50 per cent of cases associated with low birth weight. This prevalence rises from one or two per 1,000 live births to more than 200 cases of cerebral palsy per 1,000 live births when birth weights are below 1.5 kilograms. The most severely affected may require 24-hour nursing care. Very low birth weights are not only associated with cerebral palsy but also with diffuse brain injury and disordered brain development leading to poor cognitive abilities and learning difficulties in general.
It is astonishing to think that so clear an association, which costs the already over-stretched NHS £4 billion per annum, has not dictated a clear and proactive policy in favour of preventing or reducing further instances of cerebral palsy. This condition varies in its severity with problems including motor disabilities, visual difficulties, hearing problems and trouble with writing, eating, talking and walking. Epilepsy, autism and behavioural pathology are only a few of the many difficult conditions associated with cerebral palsy.
Because of the lifelong impact of cerebral palsy, the financial and social costs are disproportionately high, which should provide a sharp and prompt action. Furthermore, just as we currently have campaigns to prevent obesity in children and to educate the public about the dangers of smoking, there is a clear moral obligation to take serious action in preventing cerebral palsy and allied brain disorders from further escalation.
However, when we look at how seriously we take the issue of prevention influencing good health in the United Kingdom, the results are disturbing. According to Sir David Cooksey's report to the Treasury on medical research in this country, only 2 per cent of the research budget was spent on prevention. One year later, Dr Jo Nurse of the mental health division at the Department of Health revealed that the cost of brain disorders has now overtaken all other burdens of ill health at £77 billion in 2007. This cost is now greater than the cost of heart disease and cancer combined. That clearly is a major priority for action on what we already know and for research on the means of prevention.
What is the problem and what exactly can provide a solution? The fundamental problem directly relevant to cerebral palsy and allied developmental disorders is quite clearly related to the prevalence of low birth weights in the UK. Britain now has the highest rate of low birth weights in western Europe, with a record close to that of Romania, and twice that of Finland and Samoa.
Contributing factors to this alarming prevalence include a lack of education across the board, including academics and professionals, on the value of nutrition and hygiene, which were removed from the school curriculum in the 1970s. Their value is not emphasised in medical schools, despite its vast importance. In short, leaders in government and industry, and even within the medical profession itself, are largely ignorant of the power of nutrition in accelerating and sustaining a cycle of good health.
I deliberately select the term “cycle” in this context, because the impact of nutrition is circular and multi-generational. Despite numerous reports and recommendations on this topic, we have failed to grasp the nexus of preventing low birth weights and their severe consequences; namely, we have neglected the health of the mother. The mother's health remains pivotal prior to conception, throughout pregnancy and lactation, towards the health of her child.
Further practical solutions to protecting and improving women's health during pregnancy might include incentives through the benefit system to ensure that a nutritious diet is maintained, with the appropriate types and amounts of nutrients. For example, in order to tackle this problem in France, women had to attend antenatal appointments to secure their maternity benefits. Exposure to the advantages of nutrition, channelled through the education system, as I have previously outlined, would provide a double incentive for women to be proactive in ensuring that they are maintaining an appropriate diet and hygiene during pregnancy.
In conclusion, I seek to emphasise how fundamental prevention is when aiming to address serious health concerns within the United Kingdom. I have outlined the impact of cerebral palsy on individuals and on the rest of society in terms of financial and human cost. But cerebral palsy is only the tip of the iceberg. It constitutes only one ripple in the rising tide of mental illness, as a result of the increasing problem of impaired brain development. I focus on cerebral palsy to demonstrate how this condition is one of many that we can and should work harder to prevent, due to its clear medical severity. Finally, to reiterate my earlier point, the cost of brain disorders to the National Health Service stood at £77 billion in 2007. I hope, therefore, that we are moved to enhance this debate in the very near future on a much wider and deeper level.
My Lords, in a seven minute slot, it is impossible to do justice to this subject, which is as important now as it ever was. It places a heavy burden on families, the health service and social services, as the noble Lord, Lord Hameed, has just pointed out. The incidence of cerebral palsy—from now on, I shall just use the initials CP to avoid getting tongue-tied and to save time—at just two per thousand births, has not changed very much in recent years, although the prevalence in the population may be increasing, because of better survival rates, especially among premature babies.
I shall mainly consider the topic of prematurity and possible ways of reducing it, as it is strongly related to the risk of developing CP. The figures are striking. For instance, in a recent Australian study of 6,399 babies with very low birth weight—that is, under 1,500 grammes—who were followed up for three years, it was found that the incidence of CP was 77 per thousand births, compared to 2.5 in the population as a whole, a rate 30 times as high. Other studies have had comparable findings.
One possible reason for that is that immature tissues are more likely to be damaged during delivery, with the resultant intracerebral haemorrhage, although that can also occur before delivery. There may be asphyxia—oxygen lack—due to immature lungs. The maintenance of adequate oxygenation is perhaps the most important part of intensive care for premature babies. Low birth weight is strongly associated with CP, but as only about one in eight deliveries result in a baby with low birth weight—that is at the higher 2,500 grammes cut-off point—they contribute only about one half of all cases of CP. The rest occur in children of normal birth weight. Some of those cases are presumably of genetic origin, but the cause of many of them is not fully understood.
In recent decades, there has been great improvement in antenatal and obstetric care, so that birth trauma and asphyxia are now not significant causes of CP. However, there are some possible causative factors that can occur during pregnancy or delivery, which may well be amenable to treatment or prevention. For example, a recent paper by Dr Martin Bax, describing a large European study on cerebral palsy—to give it its full name—showed, rather surprisingly, that infection, especially urinary infection, in pregnant mothers is significantly associated with cerebral palsy. Therefore, it is essential that antenatal care includes detection and treatment of maternal infections. However, one hypothesis is that the infection is not causal but is related to a common factor which reduces a pregnant mother’s resistance to infection and, at the same time, predisposes the foetus to neurological damage.
To return to the association of prematurity and low birth weight with cerebral palsy, there is a social class gradient in the incidence of low birth weight, as there is in almost all measures of ill health. Some of that is due to the class gradient in smoking and alcohol consumption, which both, independently, have an association with low birth weight, but the social class gradient persists even when those factors are taken into account. The incidence of CP is, however, independent of social class according to several studies. That is surprising to me, and I intend to look into that further. More research is needed to determine which aspects of social deprivation are most important and how they affect the foetus.
There is evidence from studies in the East End of London, for example, that inadequate maternal nutrition may play a role. Low birth weight is much more common in the developing world. The worst figures are in the Indian subcontinent where the calorie intake and nutrition of poor women is particularly poor. The basic structure of the brain and cardiovascular system—the heart, the arteries and the veins—is laid down early in the first trimester of pregnancy. The intrauterine environment, including the nutrient supply to the foetus, is very important at that stage. The brain increases in size and complexity most rapidly in the final trimester. A premature infant misses out on this important developmental stage and comes into the world in a vulnerable state. The infant is more likely to suffer damage during delivery and it is at this stage that intracerebral bleeding may occur, often leading to permanent damage if the child survives.
Nervous tissue and blood vessels require good supplies of nutrients to develop normally. The foetus is a very efficient parasite and will rob the mother to obtain what it needs. But if the mother is depleted in important nutrients, the foetus may not obtain enough to develop optimally. Maternal nutrition is thus of great importance in reducing the incidence of premature birth. Omega 3 essential fatty acids are in the public eye at the moment. They are important in foetal development since they form a large part of the structure of brain cell membranes and the lining of arteries. The diet commonly found in deprived communities is often lacking in these essential nutrients. Even when overt cerebral damage does not occur, there is some evidence that brain function may be affected if a mother’s diet is deficient.
Here, I declare an interest as chairman of the All-Party Food and Health Group. Last year, we published a report on an inquiry into the links between diet and mental health. It confirmed the importance of essential fatty acids in pregnancy, early childhood and, in some areas, in adult mental health, but recognised that Omega 3 is not a panacea. We recommended that the Government should fund further urgently needed research into the whole area of diet and brain function. The same should apply to prematurity and cerebral palsy. More basic research is urgently needed to guide measures to reduce the distress of parents and children, and the heavy cost to the health and social services that they cause.
My Lords, we are all used to speaking in debates when sometimes we might not know the subject well, but before we speak we try to understand the subject. Fortunately, on this occasion, for me, that is not the case. I have to declare an interest: I have been an obstetrician for nearly 39 years. I have particularly looked after women in premature labour and those whose problem was foetal growth retardation.
Cerebral palsy is a major issue. It causes a lot of heartache for those families of children who suffer from it. It covers a whole spectrum, from minimal motor and intellectual deficit to considerable severe intellectual and motor deficit. The cost to the families and the state is enormous, as has been mentioned. Anything that can be done to prevent or reduce the incidence of cerebral palsy would be nothing but beneficial.
There are lots of causes. Anything which tends to produce a low birth weight baby will increase the likelihood of cerebral palsy. That will include multiple births; for example, twins and triplets. Being the father of twins, you can imagine, with my interest in pre-term labour, how concerned I was at the time. Fortunately, they did not have any problems. It also includes a damaged placenta which may interfere with foetal growth; infections, particularly rubella; poor nutrition; exposure to toxic substances, including alcohol and nicotine; maternal diabetes, hyperthyroidism, hypertension and other maternal diseases; biochemical genetic disorders or disorders of metabolism; chance malformation of the developing brain; rhesus incompatibility; enduring intrapartum period; premature labour and delivery; and, in the neo-natal period, jaundice and intrapartum hypoxia. The incidence of cerebral palsy is two per 1,000 births, and 10 per cent of that figure is related to intrapartum hypoxia. As has already been mentioned, 50 to 60 per cent of children with cerebral palsy are born prematurely; the lower the gestational age, the higher the incidence of cerebral palsy.
What this tells us is that any strategy to prevent cerebral palsy has to address all these causes because no single treatment is likely to succeed. That is the case for any medical condition where there are multifactorial causes of the disease. Pre-term labour, for instance, is increasing in this country and is now reported in 8 to 9 per cent of all births. The number of babies being born between 20 and 28 weeks is increasing. Eighty per cent of these children will suffer some form of cerebral palsy compared with around 2 per cent of babies born at term between 37 and 40 weeks. Not just prematurity itself increases the risk, rather it is the way labour is managed and what facilities and trained staff are available for the care of very premature babies that influences the incidence of all complications for extremely pre-term babies, not only that of cerebral palsy. There is also a risk of infection if the membranes are ruptured prematurely. Such infection can cause abnormalities to the blood supply which results in an increase in the incidence of cerebral palsy.
I turn to birth asphyxia. We should set out in guidance for our hospital maternity units that any mother going into labour with a normally formed baby over 32 weeks’ gestation should not have a birth that results in asphyxia; it should be an event that never occurs. We have the facilities to diagnosis intrapartum hypoxia. While that will reduce or prevent only a small percentage of children being born with cerebral palsy, none the less it would make a significant contribution. These incidents do arise, unfortunately because the only way of diagnosing birth asphyxia is through the interpretation of foetal heart rate patterns. It is not an easy thing to do and requires a lot of training. The lawyers use this as if it is a case of cause and effect, and litigation mostly relates to children with cerebral palsy whose aetiology is not intrapartum hypoxia, but may be prenatal. However, these cases are based on the association between abnormal foetal heart rate tracings with the subsequent development of cerebral palsy. The issue is not as simple as that because we need to discuss acid-base balance; that is, acid levels in the baby’s blood at birth and so forth. However, I shall not go into that.
The question of nutrition is difficult. It is easy to cite nutritional factors, but in my view, in the developed world the nutrition even of people whose diet is not healthy is unlikely to be a major cause of large numbers of children being born with cerebral palsy. The figure is not zero and it may be avoided, but nutrition is not likely to make a major contribution because of multifactorial causes. Restriction in growth may occur due to dietary deficiencies, but some factors might cause both cerebral palsy and poor growth, with poor growth being the epiphenomenon, not the causal pathway. Is growth restriction irrespective of aetiology causally linked to cerebral palsy, and the more severe it is, the higher the risk of cerebral palsy? Does intrauterine growth restriction cause conditions such as hypoglycaemia in the baby, which then leads to poor brain development? We have to understand all these phenomena to be able to say that a particular diet or remedying a certain nutritional deficiency will lower the incidence of cerebral palsy. However, it is true that rectifying iodine deficiency, which is not a major cause of nutritional deficiency in this country but is in some other parts of the world, will significantly reduce the incidence of cerebral palsy.
My time is up, but noble Lords can tell that I could go on for quite some time.
My Lords, I thank the noble Lord, Lord Hameed, for initiating this debate about a condition which causes suffering in so many and for his very informative contribution. In the company of the noble Lords, Lord Rea, Lord Patel and Lord McColl, with all their medical expertise, I speak with some humility. From what we have heard, it is clear that cerebral palsy, in all its forms, is a major healthcare issue in the UK. As we have heard, it afflicts about two in every 1,000 babies. Assuming 600,000 births per year in Britain, that will mean about 1,500 new cases a year. Given a lifespan averaging 70 years, that means around 100,000 people with cerebral palsy in total. That makes it the most common motor disorder, one often accompanied by epilepsy, learning and behavioural difficulties and dystonia, each bringing additional problems in need of solutions.
I am told that it is not easy to predict which babies will develop cerebral palsy. As the noble Lord, Lord Rea, has said, we know that it is much more common in premature babies and that more babies are surviving evermore premature births because of medical advances. However, about half of all cases are not evident at birth and are detected only in the first year of life, often without a maternal or perinatal disorder being evident. Clearly, that makes the detection and prevention of these cases very difficult. We know that perhaps up to 10 per cent of cases follow a conspicuous episode of birth asphyxia. Another 10 per cent may have suffered a stroke in utero and a similar proportion might be due to genetic causes. We should note that in up to 20 per cent of cerebral palsy cases, no structural brain damage can be detected even with the best available imaging equipment. We have been told that the last trimester of pregnancy is a particularly vulnerable time for the foetal brain.
A dilemma for doctors must be that the damage found in the first year following normal term deliveries is often very similar to the brain damage in premature babies; namely, what appears to be a wasting away of the cabling linking neurons within the brain which is found in some 40 per cent of cases of cerebral palsy. Therefore, I suggest that research should try to find common factors at work. The priority might be to concentrate on that 40 per cent category, which shows the wasting away of cabling in the white brain matter linking neurons. I am told that that damage pattern is known as periventricular leucomalacia or PVL.
Many factors may contribute to this early brain damage known as PVL—some genetic and some environmental. The noble Lord, Lord Patel, gave us a very strong sense of the complexity of it all. Clearly, a major concern is maternal infection or inflammation of placental structures. However, it can be very difficult for doctors to identify those pregnancies at risk, except by watching very closely for clinical symptoms or previous complications in pregnancy. Indeed, it can be very difficult to find guiding patterns among the complexity.
Does the Minister agree with those consultants who believe that more comprehensive national registers and databases linking maternal and child health records are a necessary basis for future research strategies? At present, the collection of data on cerebral palsy is said to be ad hoc and patchy. Might there not be some kind of legal requirement to collect such data? Good data on foetal and neonatal brain damage and neurological dysfunction are seen by some specialists in this area as essential for progress, alongside appropriate epidemiological clinical and scientific input, to identify national strategies and interventions, including new imaging methods.
I declare an interest in the prevention of cerebral palsy as patron of the Dystonia Society. Dystonia is a general term used to describe a range of movement disorders that cause involuntary muscle spasm and contraction. A recent study indicates that dystonia is present in up to 20 per cent of all types of cerebral palsy. On the basis of my earlier calculation, that means 300 new cases of dystonia per year, and a UK total of about 20,000 cases related just to cerebral palsy.
Many young people with cerebral palsy and dystonia are treated in the excellent Evelina Children’s Hospital, just across the river from your Lordships’ House in St Thomas’s Hospital. I have leaned extensively tonight on the specialist knowledge of the Evelina’s consultant paediatric neurologist, Dr Jean-Pierre Lin. I hope that he will forgive any errors in translation. Dr Lin believes that dystonia in cerebral palsy cases is of particular concern as it can result in continuous muscular spasms and twisting that are both painful and disabling. The child with dystonic cerebral palsy can be helped by medication such as botulinum toxin injections to relax muscles and, as appropriate, intrathecal baclofen pumps injecting another muscle relaxant into the spinal canal. Specialists are also encouraged by the results of deep brain stimulation in specific circumstances, although the treatment is relatively recent. The specialists also believe that care for these children is best delivered through multidisciplinary teams within approved frameworks, working in close liaison with children and their families.
In order to support children with cerebral palsy and their families, the Government should prioritise more training and education of healthcare professionals on cerebral palsy and dystonia; better co-operation between health, education and social services in the interests of the children; nationwide resources for data collection and the development of national protocols and studies; and greater support for organisations such as Scope, HemiHelp and the Dystonia Society to develop strategies within communities to help children with cerebral palsy and dystonia. I trust that these groups, with the health professionals and medical researchers, can count on enhanced support from government in working towards the ultimate goal of preventing cerebral palsy blighting so many young lives.
My Lords, my background is in local government and transport. I hope that expert noble Lords who have spoken will tolerate someone speaking as a layman. However, two people close to me have children with cerebral palsy, so I see regularly at first hand what the noble Lord, Lord Patel, described at the heartbreak that is involved in raising a child with this condition. As it affects one in 500 babies, it is likely that many of us will know someone who deals with this on a daily basis.
I start by paying tribute to organisations such as Scope, the Dystonia Society and the numerous local charities that do so much to support parents and children, raise awareness of the issues throughout society and provide the practical help and support that is needed. What strikes me about my two friends is that their children were born 17 years apart and yet have had very similar experiences. This demonstrates that, while we have invested a huge amount in research, we have not kept our response up to date in terms of what happens after birth. That is what I will focus on.
It is strange that, despite the consensus that early diagnosis is extremely helpful, too often it does not happen unless there has been a crisis at birth. Often one hears from parents that they sense that something is not right about their child, but cannot get the health professionals to take them seriously. Having listened to the debate this evening, it seems that if we could understand more about the causes—the poor nutrition and other factors that are linked to low birth weight and increased risk—it might be possible to identify the condition much earlier.
A friend of mine has a toddler with CP. He was diagnosed fairly early because his parents were articulate people who knew their way around the system and would not take no for an answer. When they eventually received the diagnosis, they were told that there would be a seven-month waiting list for physiotherapy and then their son would receive one hour a week. They have done what other parents have done and have turned to the Peto Institute in Hungary for help for their son.
I recognise that there is controversy about the methods of the Peto Institute, and that the jury is still out. Nevertheless, for many people, that has provided the only hope, because the Peto Institute offers an essentially optimistic way forward for parents and children who are suffering very badly from low morale and a sense of hopelessness. The work that the institute does through its conductive education programme, working to improve social, emotional, cognitive and communicative skills, as well as motor problems, is enormously powerful for the parents and the young people. I am told by parents that the conventional approach that they receive in this country fails to educate them about how much they can do, even about simple things, such as massage.
Few parents have access to conductive education. When they do, they often find that it comes to an end when the child reaches school age. Then, the child usually regresses. That is very demoralising for the child and for the parents. That points to, to use the cliché, a lack of joined-up thinking between the healthcare professionals, the social care professionals and education professionals, many of whom do not really understand that a child with CP will often have multiple problems. They often find that the specific programmes aimed at people with learning difficulties assume that the child has no other impairments, while the programmes aimed at people with physical problems often ignore the fact that they may also have learning difficulties. There are some harrowing stories about the failure of health services to understand the special needs of some individuals. Scope gave evidence to the Human Rights Committee in another place and talked about how a student from one of its residential schools was unfed in hospital for three days because no one knew how to do it.
Although it is clear that the reduction of cerebral palsy is the ultimate aim, the fact is that over the years, we have not been able to achieve that. Therefore, I hope that the Government will continue to invest as much as is needed to make the lives of those children who have it better.
My Lords, I, too, thank the noble Lord, Lord Hameed, for introducing this important debate. I was fortunate in being trained at Guy's Hospital, where we had a marvellous paediatrician called Dr Ronnie MacKeith, who did a lot to pioneer the subject. He was centred at the Evelina Hospital, which was part of the Guy’s complex, and it is great that the name has been retained as it has moved around Southwark. He has been succeeded by Professor Brian Neville, who has continued to do excellent work.
There are several well defined cerebral palsy syndromes, and they have distinctive clinical manifestations and causes. Primary prevention requires interruption of the causation trail. For instance, there is full-term birth asphyxia giving rise to athetoid CP, as has been mentioned. Secondly, there is neonatal jaundice. Kernicterus is a condition of very severe jaundice which is largely preventable. Thirdly, there is premature birth, which has been mentioned by the noble Lord, Lord Hameed, and others. Fourthly, hemiplegic CP and tetraplegic CP have multiple causes.
A key part of primary prevention is, therefore, high-quality paediatric neurological services. Currently, those are underprovided, especially at district level. The additional impairments should include psychiatric and behavioural impairments, which are very common in early-onset brain impairments, especially when there is cognitive impairment. These include ADHD, autism spectrum disorders, confrontational behaviour and depression. There are currently major problems in providing psychiatric and behavioural diagnosis and care for children with early brain damage. This is a major problem in childhood disability and epilepsy spheres, and a lot is being done to try to remedy this.
As has been mentioned, one primary-prevention priority might be adequate pre-pregnancy care, including persuading mothers to desist from alcohol and smoking, to attend antenatal care, to take regular exercise, to have a healthy diet, and to ensure that their vaccinations are up to date. Ten per cent of CP is genetic, so families need to be investigated carefully, especially those who have had one affected child, and given genetic counselling. I am not clear that vulnerable potential parents are being identified and supported. Pregnancy decisions asked of young people might be better rehearsed when they are in their early teens at school. They are interested in themselves as parents at that time, but have time to consider the major issues that may arise in the future.
Others develop more severe problems. In addition to alcohol and smoking, they take addictive drugs and are at risk of infection, including HIV. They take up crime and in effect drop out. There is a great deal of evidence that the failure to identify and manage childhood cognitive and behavioural problems, especially ADHD, underlies many of these troubles. They are in turn a potent associate of early unplanned and high-risk pregnancy. Pre-term birth is a major preventable cause of cerebral palsy in rich countries, as has been mentioned, and despite better management the survival of more immature babies tends to balance these improvements. Although high standards of antenatal care contribute to prevention, a major issue remains that requires research and funding.
Secondary prevention is of great importance, especially in preventing contractures and maximising the potential of children with established impairments. This involves the community-based child development centres, which should provide ongoing medical and therapeutic input. In the case of CP, there is also a need for specialist referral centres, usually at tertiary paediatric neurological centres, which provide specialist diagnostic and management services in orthopaedics, epilepsy, and communication and behaviour disorders. These services have severe problems and lack appropriately trained therapists.
Community-based services often concentrate on those under five, so the provision for school-age children is often rather patchy, and access to specialist medical services is very difficult. The solution is to set standards for these services. There have been a number of contributions in this direction, but there are no NICE guidelines except on highly specialised interventions. Will Her Majesty’s Government alert NICE to this omission? These disorders are complex and multifaceted and show many individual changes that are characteristic of developing children. The medicine is thus very complex, and it is essential that able professionals are attracted to the subject. Long-term complex disorders require the integration of health, education and social services, for which there are no clear guidelines. Charities and NGOs have traditionally provided many of the services for childhood disability, but there is an unwillingness to engage in long-term contracts with them. This is quite an omission.
As has been mentioned, perinatal brain damage has markedly reduced in rich countries but is still a very serious problem in resource-poor areas of the world. A lot needs to be done in this area. Could we suggest that Her Majesty’s Government consider setting up a five-year research project—with obstetrics, paediatric neurology, neonatology and the legal profession as partners—to investigate the science underlying claims for compensation? It could investigate the evidence for perinatal damage and build up a body of case law. The five-year introduction of such a service would cost no more than one legal settlement. I would be grateful for the noble Baroness’s reaction.
I congratulate and thank the noble Lord, Lord Hameed, for picking up this debate from the noble Baroness, Lady Finlay. I knew that I might find myself, at least with the noble Baroness, Lady Scott, as the least qualified person in the debate, and indeed that has proved to be the case. However, I am pleased to have the opportunity to discuss what the Government are doing to reduce the incidence of this disabling neurological condition which affects approximately two per 1,000 live born children. As has been mentioned, it is the largest cause of childhood physical disability in the developed world.
Cerebral palsy is a group of disorders of movement and/or posture and motor function that are permanent. This is due to a non-progressive abnormality of the developing brain. There are several types of cerebral palsy. While some people are severely affected, others have only minor impairment, and that depends on the part of brain that has been damaged. I am not going to go into the detail of the different types of disorder because other noble Lords have done so more adequately than I could, including my noble friend Lord Macdonald. However, many children and young people have combinations of the different sorts of palsy, and may have epilepsy and visual impairment as well.
Before relating what we are doing towards trying to reduce the incidence and effects of cerebral palsy, perhaps I could also touch on the causes, although I have to say that the noble Lord, Lord Patel, has, as they say, written the book on this and gave us a brief masterclass. It is worth pointing out, however, that many people still think of cerebral palsy as primarily a condition caused by problems resulting in a lack of oxygen during labour and birth. These account for 10 per cent of cases, a proportion of which are definitely avoidable. Another 10 per cent are due to postnatal factors, but the 80 per cent majority have pre-pregnancy and antenatal causes. Children born prematurely with low birth weight or as one of a multiple birth have an increased risk of cerebral palsy. The condition may be due to congenital malformations of the brain and may be associated with genetic defects.
It would be wrong to consider action to reduce the incidence of cerebral palsy in isolation since it is one of the outcomes of maternity care. Action must aim to improve all outcomes. Causes of cerebral palsy during pregnancy can include infections caught by the mother such as German measles or pelvic inflammatory disease, by abnormally low or high blood pressure, or trauma to the unborn baby’s head. Better research is required to understand the causes, which is why the Government have funded the National Perinatal Epidemiology Unit to produce high quality research relevant to maternal and neonatal care. Since 1999, the Collaborative Network of Cerebral Palsy Databases, Registers and Surveys in the UK has monitored the prevalence of cerebral palsy, vision loss and hearing loss in children. In relation to the potential to reduce the incidence of damage to a baby occurring during labour, a major new government-funded study called INFANT is about to start. It is a multi-centre randomised control trial to compare the effect of an intelligent system to support decision-making in the management of labour using the cardiotocogram. The study has received funding of almost £6 million and is due to report in mid-2015. In response to the noble Lord, Lord McColl, we take very seriously the need both to count and carry out research. The Government have also funded a study called TOBY, and emerging evidence from this suggests there is a decrease in the risk of cerebral palsy diagnosed by 18 months in the at-risk children who received cooling treatment following birth.
We continue to expand our knowledge of the causes of this condition. In the mean time, we are taking action to reduce the incidence of prematurity and babies that are small for gestational age. That means that women need to be in the best possible health before conceiving. The Government have undertaken a range of public health initiatives towards improving maternal health, such as reducing smoking in pregnancy, the sexual health strategy, reducing obesity and diabetes and improving nutrition; for example Change4Life, the Sure Start maternity grant, Healthy Start vouchers and the health in pregnancy grant. That is prevention work. I say to the noble Lord, Lord Hameed, that this Government have understood the need for prevention work and its importance. At the risk of making a political point—I do not make this to the noble Lord—it was a Conservative Government which removed the nutritional guidelines for school meals, which we have now replaced. We absolutely accept the need for prevention. Only in the past year, we have introduced legislation to link maternity grant to the advice that women expecting babies should receive about their diet and health during pregnancy. That grant is not available unless that advice has been given to the mother.
It is important to improve our maternity services so that women have easy access to supportive, high-quality maternity services designed around their individual needs and those of their babies. Identifying and managing risks early in pregnancy provides the best chance to reduce premature births and low birth weights. The national service framework for children, young people and maternity establishes clear standards for promoting health and well-being. To support clinicians, the National Institute for Health and Clinical Excellence—NICE—provides a comprehensive suite of evidence-based clinical guidelines designed to improve outcomes for mothers and babies.
As I said earlier, cerebral palsy is more common in multiple pregnancies. The Human Fertilisation and Embryology Authority has developed a national programme to transfer one embryo at a time so that more births are singletons and the risk of cerebral palsy is reduced.
Uncommon, but potentially catastrophic, causes of cerebral palsy are prevented by the administration of vitamin K to reduce the risk of intracerebral bleeding in the newborn baby. Appropriate management of jaundice in the newborn also prevents cerebral palsy.
There is no doubt that improved neonatal care of premature babies has improved outcomes and one factor contributing to the reduction of cerebral palsy is the increased use of steroids given to women in threatened premature labour which significantly reduces the incidence of respiratory distress syndrome. Just today, my honourable friend has launched a newly published toolkit for a high-quality neonatal service, providing principles for the commissioning and provision of high-quality neonatal care. I know I am not allowed to use visual aids but I am very happy to share this with any noble Lord who might want to see it afterwards.
By funding the Centre for Maternal and Child Enquiries—formerly Confidential Enquiry into Maternal and Child Health—progress can be audited and recommendations made to inform change and improve outcomes. That echoes the point made by the noble Lord, Lord McColl.
My noble friend Lord Macdonald referred to dystonia and medication. I want to put on the record that NICE has been commissioned to produce guidance on the management of spasticity in children with cerebral palsy. That will include medicines effective in dystonia. My noble friend and other noble Lords raised the issue of training for healthcare professionals. The training curriculum for paediatricians includes immediate resuscitation of the newborn to deliver adequate circulation of blood, and hence oxygen, to the brain—measures to maintain adequate circulation.
The noble Baroness, Lady Scott, mentioned the Peto Institute, which is renowned and provides many parents with additional support, advice and education. It is one of a range of models of care which helps to meet the needs of some children with cerebral palsy and their parents.
While we know some services are patchy, this Government have made unprecedented investment in a range of services for disabled children. Most recently, we have given £340 million funding to the NHS through PCTs for services aimed at disabled children. It is supported by a new indicator on parents’ experiences of services for their disabled children. We are not just giving money; we are also asking the questions as part of our Vital Signs report. We have asked PCTs to provide us with specific statements on their progress in relation to wheelchairs, palliative care, short breaks and community equipment. That information will be used to inform where we should go next.
In conclusion, we believe that maternity services are the touchstone on whether we are delivering quality care based on safety, effectiveness and patient experience. Our overwhelming objective is to improve outcomes, including reducing the incidence of cerebral palsy. This means continually seeking the right kind of research over the right kinds of periods and improving the quality of care for women, babies and their families.