DOWN'S SYNDROME

HC Deb 14 May 1980 vol 984 cc1709-20

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Waddington.]

2.35 am

Mr. Clement Freud (Isle of Ely)

I seek to draw the attention of the House to the policy of the Department of Health and Social Security concerning people born with Down's syndrome.

It is fair to say that the first two questions that any mother asks when her baby is born are " Is it a boy or a girl? " and " Is it all right? " Even when the answer to the second question is that the baby is all right, most mothers will still count the number of fingers and toes just to be safe. The answer, perhaps unspoken at the time of birth, may be " No ". It is difficult to be precise because of the classification of borderline cases, but, roughly speaking, one child in 100 is affected by mental or physical handicap. Given that the average family has two and a half children, that means that one family in 40 is affected.

The high figure surprises many, because most people do not see the children. Sex, drugs, perversion and VD are all now drawing-room subjects, but

The House divided: Ayes 41, Noes 0.

handicap, particularly mental handicap, is still taboo and something that happens only to others. Even now the figures are inaccurate, because there is substantial under reporting of the incidence of mentally handicapped children. There is no registration. Each and every blind person is on a register, and the figures are there for all to find. It is somehow honourable to be blind, but not to be mentally handicapped.

Down's syndrome is the condition that is perhaps better known as mongolism. The incidence of Down's syndrome children is one in 680. In London the figure is one in 666. Carlisle has the lowest incidence in Britain, of one in 853. The highest is Cork, where it is one child in 588. It is, on average, one mongoloid child in a community roughly the size of this House of Commons. One hon. Member has a Down's syndrome child.

My purpose in raising the matter is to point out to the Government what is being done and what could be done. With 900 Down's syndrome children born this year, and with modern medicine and home insulation affording a longer life for these children, it is extraordinarily short-sighted to do as little for them as is currently being done.

In 1960, 60 per cent. of all Down's syndrome children died by the age of 5. Of the present crop, 4 per cent. die by the age of 14. When it comes to an average lifespan, they have as much chance, with modern medication and home heating—which is where they suffered— as does the average child. The cost of supporting a Down's syndrome child is a modest £4,000 a year. With a life expectancy of 60 and 900 born every year, it is a question of £100 million of Government support each year for each new crop of Down's syndrome children.

A Down's syndrome child suffers from a major genetic defect and nothing can be done, unless it were to be done by scanning the mother before the birth, because it is a chromosome deficiency. There is an opinion that such children are born to women over the age of 35. If that was true—and with the vast amount of under-reporting, one does not know—it is certainly no longer true.

What is needed above all is more communication between health authorities and health visitors and we also need a humane and proper attitude so that a mother is told realistically and sympathetically what has happened.

My wife, who is an enormous help to me in my constituency and is also chairman of our local Mentally Handicapped Children's Society, read a paper recently in which she dealt at one point with the notification of mental handicap to mothers. I should like to quote one of her case histories of a mongol child in my constituency who was born at 8.45 a.m. and the mother realised there was something wrong as the baby was not brought back to her and she saw the staff looking at her. She asked the midwife and the nurse separately what was wrong and was told the doctor would see her later. In the meantime, the maternity home telephoned the father and said: ' Your daughter has Down's syndrome; will you come in the morning '. He had never heard of Down's syndrome and neither had any of his mates. He said afterwards that he went through agonies during the night. His wife lay awake in the ward thinking that her baby was dying and in the middle of the night, got herself out of bed to go down the corridor to find out if she was still alive. The midwife told her the truth about the child at 6 a.m. and the husband came in later, but he was not by this time calm enough himself to be able to comfort his wife. The midwife and the doctor had both wished the mother to have a good night's rest before hearing the bad news.

My contention is that there is little knowledge about this condition on the part of doctors, whose only knowledge of mongoloid children is of those who are institutionalised. It is not until one is privileged, as I have been, to see children born into homes in which there is a sufficiency of love and support that one realises that the handicap of a mongoloid child can be taken as a challenge. I have figures, as I am sure the Minister has, to show what can be done for a Down's syndrome child.

I should like people to remember that under the laws of this land, a mother does not have to take her child home. If a mother has a child in a maternity hospital, she may leave that child in the hospital. I believe that children must be offered short or long-term help, and that if parents cannot cope, they too, must be given such support as the hospital is capable of providing.

All parents of handicapped children have a great fear about the future and financial worries. Most people do not realise the added financial burden that a handicapped child places on the family. It may mean that the mother permanently loses her earning power. It is not easy to get anyone to take the child in order to allow the mother to work. Long periods of inconvenience and destructiveness mean expense in replacing clothes, furniture and baby equipment. Strong toys are expensive and are used over a longer period than with normal children.

It would help if Britain could follow the lead of other countries, such as France, and recognise the added financial burden by giving more generous allowances and tax relief so that more children can be coped with at home and so reduce overcrowding in subnormality units. Parents also worry very much about what will happen to the child when they cannot look after it and about the effect on the siblings. If a child is not institutionalised, and if it is cared for and looked after, ideally in a home surrounding, the IQ can rise enormously. An untreated Down's syndrome child averages an IQ of 41 in an overall range of nil to 70. A child who is treated has an IQ average of 60.1 in an IQ range of 43 to 101.

What is missing is the understanding of massed groups in society. The greatest handicap is the label of a mongol child and the appearance. Teachers say " We do not take mongols at this school; the other parents would not like it". That is heard frequently. It is extraordinary that if a teacher said about a black child " We do not take black children; the other parents would not like it ", that would be a breach of the law. There is no breach— just intolerance. The normal child leaves home at 18. The Government must realise that the parents of Down's syndrome child have that child with them, probably, for life. A mother of 80 with a child of 50, unable to have the holiday or the retirement that she needs and deserves, is a problem that must be considered.

There is a clinic in Birmingham run by Rex Brinkworth, who has had the most sensational success. In all the recorded cases that have been treated by this man, with the support of the Down's Children's Association, children have been able to go not to educationally sub-normal " S " schools for the severely handicapped, which cost a vast amount more, but to the ESN " M " schools for the moderately handicapped. This is an investment which the Government should consider most carefully. The DHSS gave a grant of £7,000 for a period of two years so that mongol children could be trained to take some sort of place in society. That grant has now stopped, and I urge the Minister to re-examine the matter. The cost of helping one Down's syndrome child is averaged at £4,000 a year. Surely if one could reduce the price of that aid per child the investment in the association would be worth while.

As a patron of the association I have had a letter from a parent, who says: Perhaps you will wonder why we might not be happier under the umbrella of the much larger and financially stronger NSMHC. In fact most of us joined the NSMHC after the birth of our children as they were the organisation that one was immediately referred to. However it is quite clear that the aims of the DCA are quite different. We do not aim to give free trips to the theatre or caravan holidays free of charge although we would accept that this type of activity does fulfil another need. What we want for our handicapped children is really summarised in our comments on Warnock. Apart from the long term provision, which is of course the perennial nightmare, we wonder sometimes if we are doing the right thing in stimulating our children so much. We want them to lead a full life and to be as independent as possible, not to be a heavy burden on Society, but is Society ready to accommodate them at these higher levels?

The first and most general way in which the DHSS can help is by affording screening much more widely than at present. After that, and specifically, it can help by providing extra finance for the association. I believe that the initial money was well spent, and the rewards were significant. The association lectured all over England, telling people of the potential of a Down's child. That is important.

The notification of parents must be looked at again. It is wrong that there should be whispering secrecy, and that the father and mother should not be told together at the earliest opportunity. Many voluntary societies would like to help, but because of medical confidentiality they do not have a chance to do so.

Stimulation at an early age is needed, and for that money is needed. I wish that in a debate of this kind one could do more than talk. I should like to show the Minister the difference between an institutionalised Down's child and one who has had the support of a loving family, guided by the wisdom of experts in the subject.

The children used to die. They will no longer do so; they will reach a reasonable age. I hope that with the help of the DHSS there will be even more who will reach that age and be able to play a significant part in society. In Austria, which is a smaller and poorer country than ours, there is an amazing clinic, funded with State money, in which visitors are encouraged to see what happens. The results have been miraculous. I am not asking for great new clinics. I am simply asking for recognition of a problem that used to go away and no longer will. I hope that the Government will help the 900 children a year who are looking to them for support.

2.53 am

Mr. Gary Waller (Brighouse and Spenborough)

I am grateful to the hon. Member for Isle of Ely (Mr. Freud) for giving me a brief opportunity to say a word about a couple who are constituents of mine. The wife gave birth to a Down's syndrome child a month ago, and the father recently wrote to me on the subject. What he wrote confirms what the hon. Gentleman has said. Although the wife was 35, no amniocentesis test was suggested. I hope that my hon. Friend the Under-Secretary of State will say whether the age factor is important.

After the birth of the child, little advice was given on what to do. My constituent writes: The only advice offered by the paediatrician was to bring the child up as a normal baby—all very well, but the needs of the mentally handicapped are special and require specialised supervision. My constituent concludes: Your comments and advice would be welcome and any action you can precipitate to help other people in our dilemma, or to prevent these tragic circumstances happening to other prospective parents, would be a great service. I think that the hon. Gentleman has done a great service in raising this matter, and I shall be interested to hear what my hon. Friend has to say in reply.

2.55 am

The Under-Secretary of State for Health and Social Security (Sir George Young)

The hon. Member for Isle of Ely (Mr. Freud) has raised, in a compassionate and well-informed way, a number of important questions relating to the problems that we face in the area of mental handicap, and in particular those involving children suffering from Down's syndrome.

He was supported by my hon. Friend the Member for Brighouse and Spenborough (Mr. Waller). The incident which the hon. Member for Isle of Ely raised about how parents were notified of the birth of a child suffering from Down's syndrome was disturbing, and I hope to say a word or two later about the role of the medical profession.

The hon. Gentleman also spoke of the strains and stresses involved in looking after a mongol child. I think that it is worth saying that, unlike any other mentally handicapped children, mongols tend to be affectionate and friendly and, as the hon. Gentleman would be the first to recognise, very strong ties usually develop between the parent and the child.

As the hon. Member explained, Down's syndrome is a condition caused by a chromosomal abnormality. The majority of children suffering from this abnormality are severely mentally handicapped, they may have associated disabilities, including congenital heart disease, hearing and visual problems and tend in infancy to have recurrent respiratory infections.

The risk of having a Down's syndrome baby is related in most cases to the mother's age, and a mother aged 40 or more has 40 times more chance of having a Down's syndrome child than does a mother under 20. There is no cure for Down's syndrome, but it is a condition that can be detected antenatally through amniocentesis and tissue culture. The procedure does involve a slight risk to the continuation of the pregnancy, as well as some discomfort, and is therefore not suitable for the screening of all pregnancies.

The Department's policy is that there should be screenings for women aged 35 and 40 or who have a previously affected child. It is important that any such woman makes contact with the antenatal services at an early stage of pregnancy.

The procedure of amniocentesis can usually be undertaken at 16 to 18 weeks gestation, with the results available in two to three weeks. So, at the quickest, it is likely to be into the fourth month of pregnancy before Down's syndrome may be predicted. That is, of course, quite late, and the woman who does present late may find that, even if she wants it, she cannot be accepted for an abortion.

However, because older women give birth to far fewer babies than younger mothers, only a relatively small proportion of Down's syndrome births would be prevented in this way. Any decrease in Down's syndrome births seems likely to be counteracted by the increase in life expectancy, and the net result may be an overall increase in their numbers, and, related to the increase in life expectancy, the pressure on older parents.

The great majority of Down's syndrome children live at home with their families, receiving health, social and education services within the community in which they live. Where the parents can cope, that is clearly the best solution for everyone.

The hon. Member mentioned the possibility of a mother leaving a child in hospital and, as he says, that can happen. My Department in a circular issued in 1978, advised local authorities on ways of maintaining family links and what should be done if, unfortunately, contact is lost.

The hon. Member suggested that parents may not always receive appropriate advice, and he was supported in that by my hon. Friend. Whilst we are aware that parents do not get all the counselling, guidance and services that they need to enable them to help their child develop to his full potential, there is an increasing awareness of the need for these services. Comprehensive and multi-disciplinary assessment of all severely handicapped children in their local community was advocated in a circular issued by the Department following the publication of the Court report and such services are increasingly available.

Assessment nowadays means more than just the use of IQ tests. It is an assessment of the total child, his strengths, weaknesses and needs and his family situation and should be followed by specific programmes to assist him to reach his full potential.

Children with Down's syndrome are not a homogeneous group, and the degree of severity of mental handicap varies widely from child to child. The level of social and educational development of a child is substantially influenced by appropriate training and education programmes geared to his particular needs.

Many research studies with Down's syndrome children and other severely mentally handicapped children have shown the ability and willingness of parents to become involved with the development of their children, and significant progress has been made as a result, with consequent benefits to child and family. In many instances such research has provided the basis for the development of services for handicapped children. A number of such schemes, including Mr. Brinkworth's, are now functioning successfully. It is the Department's policy to ensure that all handicapped children, following assessment, receive appropriate individual developmental care and training.

A number of individuals and voluntary organisations do excellent work in helping parents with mentally handicapped children, providing services, reassurance and support, enabling parents to share experiences and problems and ensuring that they can make full use of the statutory services available. The National Society for Mentally Handicapped Children and Adults, with over 400 local societies in the United Kingdom, is the largest of the voluntary self-help organisations in this area and provides valuable help to parents and children. But of course other smaller organisations provide valuable help and assistance.

The hon. Member has raised the question of the future of the Down's Children's Association. The Department and I are, of course, well aware of the praiseworthy work done by Mr. Brinkworth and his association. Founded in Birmingham in about 1970, the association has as its aims the provision of an information and advisory service for parents of young children with Down's syndrome, promoting the care, nurture and education of the children, and study and research into the causes and effects of the syndrome.

My Department provided a grant to the association of £3,500 a year in 1977–78 and 1978–79 to assist in activities directed towards the support of parents of Down's syndrome children by offering advice and guidance based on personal experience and accumulated knowledge. While the Department was prepared to make a grant to assist this particular aspect of the work of the association, the Department's overall policy is that a fully comprehensive multi-disciplinary assessment should be provided for all severely mentally handicapped children, and our aim has been to encourage every district to set up its own assessment service with counselling and support. Many such centres already exist. In other words, while we recognise that Mr. Brinkworth and the association have done praiseworthy work to help Down's syndrome children and their parents, and we greatly welcome the involvement of voluntary organisations in such work, we consider that the multi-disciplinary approach which I have described offers the best way forward.

The hon. Member asked whether I would look again at the funding of the association. I am prepared to review the decision sympathetically. My Department wrote to Mr. Brinkworth on 18 July pointing out that he could apply for a research grant from the Small Grants Committee. We sent him the application forms, but I do not believe that we have had a response. I shall examine the question of assistance.

The hon. Member also made an eloquent case for measures that can be taken as alternatives—and often cheaper alternatives—to care in hospitals and residential homes and for the valuable part the voluntary sector can play in providing such alternatives. I support his case. It is much in line with Government thinking.

I have already said that we believe in a comprehensive multi-disciplinary service for all severely handicapped children which would provide an assessment and subsequent appropriate individual programmes and training to meet the needs of each child. A wide range of services from statutory and voluntary bodies will be needed to support the family and to enable the child to develop to his full potential. Too often in the past admission to hospital was the only alternative for families who are unable to care for their child. It is now, happily, recognised that practical help, advice and counselling and proper support services, including the availability of short-term care, can help many mentally handicapped children to stay with their family.

The hon. Member raised the question of cost-effectiveness, which is naturally a crucial consideration. The Government seek actively to ensure that scarce resources are used to the best possible effect—recognising the different needs of individuals.

The hon. Member suggested a direct relationship between the provision of support services and early intervention, and subsequent financial savings. It is difficult to demonstrate with any accuracy savings in costs in such circumstances, though obviously any savings would be welcome. However, I should like to emphasise the value of early intervention and support services in enhancing deeper developmental progress, improving the quality of life and enabling fuller use to be made of social, educational and vocational opportunities.

I should not wish to imply, however, that substantial improvements in the services that we provide for mentally handicapped children can be achieved without cost. A great deal remains to be done for these children, and in present economic circumstances progress, alas, must inevitably be slow. Health and local authorities face hard decisions on priorities, and such decisions are best made at local levels. However, my right hon. Friend and I have repeatedly made clear—and I reaffirm today—our hope that in considering how best to use the limited funds available, authorities will protect the interests of vulnerable groups, and, in particular, that group of whom the hon. Gentleman and my hon. Friend have spoken so movingly this morning.

The Question having been proposed after Ten o'clock on Wednesday evening and the debate having continued for half an hour, Mr DEPUTY SPEAKER adjourned the House, without Question put, pursuant to the Standing Order.

Adjourned at five minutes past Three o'clock am.