CHILDREN, WIRRAL (SPINA BIFIDA)

HC Deb 28 May 1970 vol 801 cc2108-19

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

6.2 p.m.

Mr. Edwin Brooks (Bebington)

The closing moments of this Parliament deserve their place in the history books, for on the very eve of dissolution we have enacted a Measure which will bring the hope and promise of a better life to Britain's chronically sick and disabled citizens.

On such a day, for which we owe so much to the patient and constructive work of my hon. Friend the Member for Manchester, Wythenshawe (Mr. Alfred Morris) it gives me particular pleasure that Mr. Speaker should have given us this opportunity to debate the educational problems of one such group of disabled persons, those suffering from spina bifida and hydrocephalus.

Spina bifida, which means literally " split spine ", is the defect which results when the bones of the spine, and the spinal cord which they protect, are not properly formed during a baby's development in the womb. Until recent years, the vast majority of these children died in early infancy, particularly as many—though not all—of them were affected by hydrocephalus. This condition arises when an obstruction occurs to the normal circulation of the so-called cerebrospinal fluid, which is a clear water-like fluid produced in the ventricles of the brain and which functions as a protective cushion to safeguard both the brain and the spinal cord from injury.

Should obstruction prevent this normal circulation, the fluid is, in effect, dammed up, producing commonly an accumulation in the brain ventricles and subsequent distension and enlargement of the baby's head. About, 80 per cent. of babies born with spina bifida have some degree of hydrocephalus, but it can also arise without the overt symptoms of split spine, or because of such ailments as meningitis in infancy.

Time precludes me from discussing the numerous and sometimes grave problems which are associated with spina bifida and hydrocephalus, at least in any detail, but the excessively high infant mortality rate until recently bears testimony to the hazards such children face from birth.

There have, however, been major advances in the past decade which have revolutionised the expectation of life, and of even a relatively normal life, for such children. There have been various developments and advances upon the original Holier valve, first used in 1958 for reducing the abnormally high pressure within the head of the hydrocephalic infant; and if treatment is applied early enough, a virtually normal childhood becomes possible even in cases of quite severe initial hydrocephalus.

During these same years of the 1960s, major advances have occurred in surgery and medicine for the treatment of the spina bifida child, and today, given proper care, well over half of those born alive can survive the critical first year, and subsequently grow up to adolescence and adulthood. Such children are now surviving in numbers which even ten years ago would have seemed a miracle; and the skill and dedication of those who have contributed to this medical advance deserve the highest praise.

But problems remain, and it should not be forgotten that the parents of spina bifida children have major responsibilities and worries now thrust upon them which the community must do its best to relieve.

During the past four years, I have been approached from time to time by such parents in my constituency, and I have deep admiration for the determined way in which so many of them have striven to overcome the handicaps which an accident of birth has placed upon their youngsters. Their children are generally paralysed below the waist, to a greater or lesser degree, which produces obvious problems of incontinence and failure properly to use muscles. These problems require, not only special toilet facilities, say, but also an understanding by both adults and other normal children of the strains such a difficulty presents to the spina bifida child.

Despite these problems, most of the surviving spina bifida children are mentally well within the range of normality, and since they have full use of their bodies above the waist, including their arms, they have considerable potential, both in terms of work and play.

For society, through its medical expertise, to ensure the survival of many of these children, and then not to apply its skills and energy to ensuring the fullest possible life for such survivors, would be unforgivable; and I wish to suggest several urgent priorities in this respect with reference to my local area.

The Wirral peninsula, which is administered by two county boroughs—Birkenhead and Wallasey—and a further two municipal boroughs and three urban districts within the Cheshire County Council area, has a population of about half a million. However, calculations of the incidence of spina bifida in terms of mean national percentages of live births, must be qualified by the higher incidence of the affliction in the Celtic western areas of Europe.

Figures of the rate to be expected are often complicated, too, by the incidence of still births, but according to the Liverpool Association for Spina Bifida, as many as nearly five per thousand babies are affected in that city.

This may reflect the high Celtic contribution to the Merseyside population, but whatever the reason for this curious genetic variation, the Association claims that spina bifida is the most prevalent congenital condition in the Liverpool area. Even accepting, as I think we must, that the rate in Wirral is rather lower—I am told that it is between two and three per thousand live births—the fact that today most of these children are surviving presents quite new problems for both the health and education services within the peninsula.

In an effort to quantify the demand for school places during the next 10 years, I obtained in 1968 figures from my right hon. Friend the Secretary of State for Education and Science which showed that 72 children were at that time assessed as suffering from spina bifida within the seven local authority areas of Wirral; 28 were of school age, in other words over 5 years old, and 18 were receiving special education.

In the autumn of 1969, a year later, I sought to bring the figures up to date; and in a letter dated 15th October I was told by my right hon. Friend that the total had risen to 79, with a rather larger proportionate increase in the number of school age to a total of 38. Of these, 29 were listed as receiving special education.

However, in Circular 11/69 of 28th May, 1969, the Department of Education and Science stated that where possible it is desirable that children that is, spina bifida children— should start their education at the nursery stage, for example, by attending part-time or whole-time the nursery units which are increasingly to be found at special schools for the physically handicapped. The Circular was at pains to stress the advantages for both children and parents of such nursery provision, and I think it follows that the statistics I have just given of children of school age minimise the scale of the demand for educational facilities which should properly be met.

Some of the children may be able to attend a normal school, but with all the qualifications necessary, my evidence would suggest that there will be about 120 children in Wirral suffering from spina bifida who will require special school places during the second half of the 'seventies, when the infant survivors of the 'sixties will have reached the top school forms. We shall have children in the other forms correspondingly.

Bearing in mind that there are many other categories of handicap, such as cerebral palsy or muscular dystrophy, we are clearly facing a problem of some magnitude, for which remedial planning cannot start too soon. Circular 11/69 showed itself fully aware of the scale of this growing need, and sought both statistics of spina bifida from local authorities, and also their proposals for increasing or improving special school provision. I do not want to suggest for one moment that this is a problem peculiar to my area of the country, but I would contend that Wirral has one or two special peculiarities which do need to be stressed.

The regional variation in incidence, for example—that is, the higher proportion in the western areas of the country—shows that nationally derived statistics would produce an unduly complacent forecast of local need in Wirral during the 1970s. Furthermore the peninsula is at present relying, in its treatment of spina bifida, upon facilities which were either not purpose-built to deal with such children, or which were designed especially with the needs of quite different ailments in mind.

The most notable example of this is the Cerebral Palsy Unit at Clatterbridge Hospital, in my constituency, which was constructed on the initiative of the Spastics Society and is now the responsibility of the regional hospital board. This unit has for some years been accepting spina bifida patients—and I stress that the word is " patient " rather than " pupil " at such a unit—and at this moment there are five children from Birkenhead alone at this unit. The pressure for accommodation at Clatterbridge is now severe, coming from as far away as Chester, and I understand that further classrooms would be needed as a short-term palliative.

However, I would not regard such a palliative as in the best long-term interests of the children. It is surely not desirable for children to be educated constantly within a hospital environment. These children need a school, just like other children, where their special requirements can be met with skilled and sympathetic help, and where they are given the status of pupils in pursuit of learning and skill.

Ideally—and I know this is the Government's policy—special schools for the handicapped need to be purpose built, in order to respond to the very different requirements of different types of handicap; equally they need to be outside, but not too far away from, the district hospitals where specialist medical help can be provided whenever necessary.

Against this background, I have been watching with some interest and concern the efforts by Birkenhead education authority to gain Ministry approval for a day special school for physically handicapped pupils at Woodchurch, in that part of my constituency which falls within Birkenhead. This is planned to offer 100 places for pupils aged five to 16, including those with spina bifida.

Furthermore, and essentially as a short-term measure, the authority proposes to open a nursery class for up to 10 preschool children in October, 1971, attached to a normal infants' school. This, it is stressed, will only be an interim measure designed to cover the period prior to the opening of the day special school, where the authority tells me that it is hoped to take children of nursery age initially. On 24th January the authority submitted its application for the day school to the Ministry again, and I see that a forecast of some 33 school places for spina bifida children in Birkenhead alone has been made for mid-1974. This figure, incidentally, excludes nursery places.

I would be grateful if my right hon. Friend, in her reply, would clarify what is now happening to this request, particularly as time is marching on and the Department has several times indicated that a reply could be expected in the near future. The authority's case will, of course, have to be judged on its merits, but on that score I would feel a good case has already been made.

However, I would like to clarify the future rôole of such a day school in relation to neighbouring local authorities in Wirral. The present pattern is kaleidoscopic, with children crossing administrative boundaries in all directions, en route to Clatterbridge, or to the Day Special School at Elleray Park, Wallasey, the Children's Convalescent Home and School, West Kirby, the Royal Liverpool Children's Hospital, Heswall, and the Children's Hospital, Birkenhead.

Furthermore, they are transported in all sorts of different and more or less unsatisfactory ways, often via ambulances which have other, sometimes urgent, calls upon them, resulting in erratic journey times for the handicapped children going in and out daily.

In a few years time, if the Maud recommendatons are broadily implemented, the existing pattern of divided responsibility for education in Wirral will in any case have vanished—although I personally trust that it will remain firmly bedded in the peninsula as Maud urged. This is surely, therefore, a time to plan for Wirral as a whole, not least in this matter of providing specialist facilities for a small minority of youngsters who are thinly scattered across the homes of the peninsula. In my maiden speech in this Parliament I urged the case for a more rational structure of local government, and it is no less urgent a plea four years later as this Parliament—but not, of course, its Members—draws to its end.

My concern then is to seek some clarification from the Department of the sub-regional provision required for the education of the physically handicapped during the first half of the 1970s—a period when the school leaving age is to be raised, and when ever more adolescents, including handicapped adolescents, will wish to pursue studies after the age of 16.

In the case of spina bifida children, as with other categories of handicap—such as autism—for which society is now accepting much wider responsibility, it is inevitable that there will be need for flexibility and experimentation, for in this field, more than most, it is true that no two children are entirely alike.

But flexibility within a broad strategy is one thing; what we cannot permit is the sort of erratic and arbitrary situation in which the chain of responsibility is tangled up in administrative red tape. One particular example of this deserves mention, because I think it raises a general point about the definition of capital grant.

I mentioned a moment ago the inadequate transport facilities available to children being taken to and from hospitals as day patients. Recently, I was told that the new Birkenhead Social Services Centre was severely restricted at first by a lack of specialised transport, particularly for the elderly and frail. My general question, therefore, is to what extent, when projects for the handicapped are considered by the Department—and, indeed, by any Department—explicit attention is given to this aspect of equipment. Clearly, it is self-defeating to have a purpose-built centre, with all the sophisticated fitting and specialist staff, if the handicapped people for whom it caters have difficulty in getting there at all, or at least getting there and away on time.

I assume that certain items of equipment, such as special toilets, are normally included in the initial planning of a handicapped persons' building, but I do not know whether it is Departmental policy to leave the responsibility for supplying transport equipment to the local education or the local health authority to meet out of recurrent grant, via the rates, or what have you.

In this particular case of the Day Special School at Woodchurch, Birkenhead, can we be told what plans have been made for this priority of transport? It seems to me that there should at least be an effective nucleus of transport laid on, with the bricks and mortar as it were, to avoid the present situation where the regular daily transport of handicapped children, and others, seems to be the residual legatee of the local ambulance service.

I have here an account written by a local parent to me recently, which surely makes the point clearly. He refers to one example of a young, handicapped child getting up early to be ready for the ambulance at 8.10 a.m. and arriving home at 5.15 p.m. exhausted, falling asleep over tea…. Another day the transport arrives at 10.15 a.m. In these erratic conditions, child patients are tearful, tired and bored—and it is a daily routine. The wide variations complicate parents' lives and arrangements with other children. At the school, with time out for treatment, valuable hours are lost by late arrival and early departure, planned treatment schedules are upset. There are many other support facilities, as well as transport, which time alone forbids me raising now, although I am tempted to mention the need to encourage further research into specialist appliances, such as tricycles designed for these children. which can help spina bifida children enormously.

But my final point is on behalf of the parents, as much as the children. Those who have not their experience of having a handicapped child in their family can only marvel at the patience and loving kindness which so many parents provide. But they have enough anxieties without having to worry incessantly about their children's educational future. As one parent said to me: I believe that it is important that physically handicapped children should be educated and not miss out on education, giving them another handicap. Another stated: Parents whose children are settled in schools feel tremendous relief both for the child and themselves. Some mothers talk of being released from a prison. I hope that my right hon. Friend, whose long record in Parliament is testimony to her compassion and concern for these human dilemmas, will feel that the problem I have raised is worthy of her final speech in the House to which she has for so long brought so much distinction and grace.

6.20 p.m.

The Minister of State, Department of Education and Science (Miss Alice Bacon)

I am always grateful when hon. Members draw attention to the needs of handicapped children, and I am glad that my hon. Friend the Member for Bebington (Mr. Brooks) has given me an opportunity to speak on the needs of children suffering from spina bifida, and of those in the Wirral in particular. He has raised many matters, and he will realise that some of the points which he made could more properly be put to my right hon. Friend the Secretary of State for Social Services.

Comparatively speaking, this is a new problem, though one to which both my Department and local education authorities have already given a good deal of attention. We must all welcome the recent great advances in surgery for the newborn. Many children who, even a few years ago, would have died in infancy, or lived as helpless cripples, now survive to school age and beyond. Where the handicap is less severe, they can even take their place, with suitable care, in ordinary schools. Others will need places in special schools for physically handicapped children, and some may need to remain in hospital and be educated in hospital special schools.

Generally, school is preferable to education in hospitals if the child's physical condition permits. But there is no denying that the rapid developments now taking place present us with problems with which the existing special schools provision is not adequate to cope.

As my hon. Friend realises, this is not a problem peculiar to the Wirral, although that is the area under discussion now. The most recent estimate of incidence made by the General Register Office is that per thousand live births there are 1.73 children affected by spina bifida, with or without hydrocephalus. This would mean 1,500 children annually so afflicted in England and Wales, of whom in future about 600 a year are expected to survive to school age. However, as my hon. Friend has said, the incidence is not uniform throughout the country. As yet, little is known of the extent of the regional variation.

My Department recognises the need for special action to meet this growing call upon us and has taken the following steps. First, in a Circular issued towards the end of 1968 we drew the attention of local authorities to the need to include in their building programmes for 1971–72 and onwards schemes of school building which would benefit children suffering from spina bifida as a matter of priority. Many local authorities have already submitted proposals, and these are at present being considered.

The funds available for building special schools are being increased year by year, from £5.6 million in 1969–70 to £7.7 million in 1973–74. Also, we have sent out to local authorities a Circular of general guidance on the incidence of spina bifida and on the educational problems which children suffering from this handicap present. This has been generally welcomed.

Fortunately, the severity of the handicap varies greatly, and it is not always necessary to provide education in a special school. At present, many authorities lack experience in treating such children, but, with increased numbers, experience should rapidly develop, and arrangements suited to the individual children's needs will be made.

I come now to the special problems of the Wirral, which my hon. Friend has so feelingly described. This is not the first time my attention has been drawn to them, and I fully accept that there is a need to be met as quickly as possible. I welcome the initiative of the Birkenhead local education authority in putting forward a proposal for a day school for physically handicapped children. This proposal is now in my Department. As my hon. Friend will realise, there are great pressures on our building programme for the year 1971–72, but the urgency of this proposal is clearly appreciated. I am pleased to tell my hon. Friend that my Department will be writing in the near future to the local education authority with a favourable decision.

The present proposal from Birkenhead is for a school for 100 pupils aged 5 to 16. My Department has not yet discussed the schedule of accommodation with the authority, but as at present it includes no provision for a nursery unit, I shall draw the attention of the local authority to the need for one for about 20 children to be added.

There remains for me to say a few words about the provision made at Clatterbridge Hospital, whose exceptional work in caring for these children and providing space for a hospital special school is much appreciated. I understand and fully accept that at present the hospital is feeling the need for increased space for the school. This is a matter for my right hon. Friend the Secretary of State for Social Services, but I understand that at present funds are not available for building within the hospital precincts. In general, also—I believe that this is agreed between the hospital board and the local education authority—there is a lot to be said for making additional provision in schools rather than in hospitals, thus keeping the children, if their physical condition permits, in the main educational stream. This is another reason why we want to see the proposal adopted at Birkenhead.

My hon. Friend raised the question of transport for the children to the school. This is a matter for each of the local authorities which send children to the school, and I hope that they will make every effort to provide a satisfactory service. I must say that, in dealing with special schools, this is the first time I have had criticism of the provision made for transport. Most local authorities usually provide it satisfactorily.

Mr. Brooks

I apologise for not making my original point clearly. I was referring specifically to the children being taken to Clatterbridge Hospital, not to the Elleray Park School, Wallasey.

Miss Bacon

In that case, it is a matter not for my Department but for my right hon. Friend. A local authority with special school services usually provides excellent transport facilities for taking the children to and from such schools.

I hope that, with the assurance I have given about the school at Birkenhead, my hon. Friend will feel that his efforts have not been in vain.

After 25 years in the House, this is the last speech that I shall make, and it seems that it will be the last speech in this Parliament.

Sir Douglas Glover (Ormskirk)

I am not sure.

Miss Bacon

My maiden speech 25 years ago was on the Industrial Injuries Bill, and my swan-song is about children with spina bifida. I think it appropriate that the House should take time to consider these children in the closing stages of this Parliament. One of the great features of the British House of Commons is that, in addition to time devoted to debates on world affairs and great economic problems, there is always time to consider the less fortunate. I am pleased that it has fallen to me to make my last speech in the House on the care and provision which we make for this small group of less fortunate children who suffer from spina bifida.