| Previous Section | Back to Table of Contents | Lords Hansard Home Page |
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
4 Nov 2009 : Column GC75
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.
5.32 pm
Lord McColl of Dulwich: 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
4 Nov 2009 : Column GC76
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
4 Nov 2009 : Column GC77
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.
5.40 pm
Baroness Thornton: 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.
4 Nov 2009 : Column GC78
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
4 Nov 2009 : Column GC79
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.
4 Nov 2009 : Column GC80
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.
Vision 2020
Question for Short Debate
5.51 pm
To ask Her Majesty's Government what progress has been made towards implementing the aims of the Vision 2020 initiative to prevent avoidable blindness and support those in developing countries who are unavoidably blind.
Lord Crisp: My Lords, it is a privilege and a pleasure to introduce this debate. In asking for it, the aim was to raise the profile and to argue that blindness and eye health should be much more mainstream in international development. It is reasonable to say that we have already got a degree of success in raising the profile by the large number of noble Lords who have decided to speak, to whom I am very grateful. I am very much looking forward to hearing the contributions from so many Peers, including their experience and their concerns. I know that we will be hearing about this in the context of India and Africa. I am only sorry that there is such a short allocation of time.
My task is setting the scene. I will be brief and will ensure that I do not go beyond my more generous time allocation. First, I declare an interest: I am proud to be chair of Sightsavers International, which for almost 60 years has promoted and provided programmes and services to prevent and treat blindness, and to support blind and partially sighted people in partnership with local organisations in 33 countries. Sightsavers International is a founding member of the International Agency for the Prevention of Blindness, which brings together the world's leading eye organisations to deliver Vision 2020: the Right to Sight as a joint programme with the
4 Nov 2009 : Column GC81
My point is not just to declare an interest and record appreciation, but to say that there is an enormous unity of purpose among eye organisations, excellent corporate support and good support from the World Health Organisation. I would like to see the Government give eye health an even more prominent place in their thinking and give it more support. I understand that the Government have not ignored eye health and that £50 million has been allocated for neglected tropical diseases, which include, for example, onchocerciasis, for which allocations will be made. I am disappointed that they do not also include trachoma, a neglected disease which particularly in many cases affects women.
Let me be clear about what I am asking about progress and Vision 2020. Vision 2020 was launched in 1999 with two aims; first, to eliminate avoidable blindness by 2020 and, secondly, to prevent the projected doubling of avoidable visual impairment by 2020. So there are two very clear aims. This is a big problem but we can deal with it.
I want to describe the problem and make it clear that action can be taken. I shall give a few figures to illustrate why we should act and give this issue greater prominence. Three hundred and fourteen million people live with severe visual impairment, of whom 45 million are blind. Those are very big numbers. Seventy-five per cent of that blindness is treatable or preventable. Most of it comes from cataracts, trachoma and river blindness, all of which are perfectly treatable or preventable. I know that some noble Lords will speak about these diseases and what can be done. My third, and sad, statistic is that 90 per cent of blindness occurs in poorer countries. That statistic speaks for itself. Less well known-I apologise to noble Lords for producing all these statistics-is that this is also a gender issue. The best estimate suggests that two-thirds of blind people in poorer countries are women. The reason for that is twofold. First, they are more likely to be affected by conditions such as trachoma because they look after the children, deal with the dirty water and are exposed to infection. Secondly, in most cases they are, sadly, less likely to get help, so they are hit two ways. As I say, the best estimates suggest that, consequently, twice as many women in poor countries are blind than men.
This is not just about blindness as if blindness were a simple and single thing; it also affects people's life chances. We need to ensure that we do not see it just in terms of health. According to research from the International Centre for Eye Health, a blind person who gets their cataracts dealt with returns to something like their previous economic status within a year once their blindness is treated. In other words, they are able to resume some kind of economic activity, or at the
4 Nov 2009 : Column GC82
I said at the outset that I wanted to gain greater prominence for this issue within the Government and more widely, and to "mainstream" it, as eye health is too often left out of the thinking. I talked recently in Mali to an American involved in international development who thought it was strange that eye doctors were being trained there when the country had other pressing needs. He ignored the fact that eye health affects so many people in a community. I fear that that sentiment is relatively common. Eye health should be seen as key to the millennium development goals, including education, women's rights and employment. I want to make three suggestions to the Government and I look forward to the Minister's response.
First, there is, rightly, renewed emphasis on primary care. A great deal of eye health disease can be dealt with very easily in primary care; for example, the more minor conditions, not necessarily cataracts or trachoma but diseases arising from poor hygiene, living in dusty and desert conditions and sometimes from using traditional remedies. These are too often missed out. We want to see eye health emphasised as part of primary care, so that when you are pushing forward your policies on primary care, eye health is a central part.
| Next Section | Back to Table of Contents | Lords Hansard Home Page |