There are about 100,000 children with cerebral palsy in this country. They are variously afflicted: their symptoms vary from mild weakness, through hemiplegia (paralysis of one side of the body), difficulties with speech, damaged hearing and eyesight, to extreme physical helplessness: not able to sit, let alone stand, not able to hold anything in the hand. Some have perfectly good brains working inside affected bodies; some are mentally impaired.
Parents of all these children live with that sense of the child that might have been - the dancer, the footballer - and strain to restore their damaged child as close to the perfect image as they can. They are helped by paediatricians, nurses, physiotherapists, speech therapists, school teachers and other professionals. Some parents have bad experiences. Parts of this country are poorly served. In any case, looking after a severely handicapped child is exhausting and isolating. Parents often feel they have descended into a nightmare world in which they trail from clinic to clinic, sitting for hours in depressing hospital waiting rooms, unable to get the information they want, not always spoken to as kindly or considerately as they should be, obliged to put their children into schools they consider second-rate, and to watch them bored, frustrated, going nowhere.
There are some first-rate medical centres and schools in Britain. There are some parents who are happy with what's on offer in their district. But orthodox medicine is not good at blowing its own trumpet; and the service is poorly co- ordinated and patchy. The parent of a handicapped child is very likely to be angry, and to need to put the blame for what has happened somewhere; where facilities are poor and under-funded, there is an obvious target for this anger and blame.
Parents of handicapped children are also especially vulnerable to offers of miracle cures. The promise that your child will rise up and skip like Joe Egg, like the neighbour's child, like your dream child, if you will only do such-and-such, or go to Lourdes, or the moon, is almost irresistible.
In the mid-1980s, parents of children with cerebral palsy heard from a man who promised them a unique and revolutionary system to help their children. He was Andrew Sutton, a specialist in East European Studies at Birmingham University. In 1986 he was co-editor of a book called Conductive Education: A System for Overcoming Motor Disorder, which talked of a method for treating cerebral palsy (and spina bifida) used at the Peto Institute in Budapest.
The method, devised after the Second World War by a Hungarian physician, Andras Peto, involves treating children in groups, using special equipment - wooden plinths on which they sleep and exercise, and ladderback chairs which are used as supports. Its central feature is group work of great intensity, in which the children encourage one another and are guided by a 'conductor', who combines the roles of teacher, physiotherapist, speech therapist and nurse. Mr Sutton claimed that it achieved a phenomenally high success rate in getting children with walking problems on to their feet. At the end of the book he called for the setting up of a similar institute in Britain.
At about the same time, in April 1986, a BBC film, Standing Up for Joe, was put out and had an overwhelming effect on parents of CP children. It contrasted the discouraging advice given to the parents of one afflicted child in this country, and the poor quality of care offered to him, with the hopeful promises and dedicated care given by the Peto. It called for parents to get off their backsides and take their children to Budapest.
It's hardly too strong to say the response was something like mass hysteria. The BBC received 11,000 letters. Hundreds of families set off for Budapest, raising money as best they could, splitting up husbands, wives and other children, knowing not a word of Hungarian. The press was full of stories of miracle cures: in Hungary, it was said, CP children learnt not only to walk but to skate] The terrible dread of the wheelchair could be banished for good.
Parents and sympathisers, led by Andrew Sutton, formed a pressure group, Rapid Action for Conductive Education. The media coverage and the skilfully and energetically-run pressure group produced effects. There was a steady stream of press stories and television debates. The Government, never generous in spending either on research or treatment of handicap, was pushed into action. It gave money - initially pounds 250,000, but then much more - to help set up the Birmingham Project. This was, in effect, Sutton's programme of a study to compare British methods with Peto methods, and to found an institute in Birmingham which would put Peto methods into practice. Ten British children were selected by the Peto people and sent to Budapest, along with 10 young British women to be trained as 'conductors'. After an initial period in Budapest, the children were to return to Britain and continue at the Birmingham institute, staffed by Hungarian and English conductors. Their progress was to be monitored and compared with the progress of another group of children going through the British system.
IN 1988 I was invited by the BBC to follow the Birmingham Project for a television programme. One of my qualifications was that I was familiar with handicap, having an adult son with spina bifida. I got to know some of the families involved, and I talked to many doctors and therapists.
Enthusiasm for Peto and its methods was not shared by everyone in Britain. Many British children with CP did, after all, learn to walk too. In fact, a study made in the 1960s (by Beals and Sutherland) had shown that the motor performance of all spastic diplegic children changed up to the age of seven, and that improvements were not necessarily related to treatment at all.
So there was some scepticism from the medical profession about the claims made for Peto. The sceptics pointed to the lack of verified information, or indeed any scientific account at all of its methods or success rates: when Andras Peto died in 1967 he left only 'a handful of articles and . . . a small book of lectures, now virtually unobtainable, edited under his supervision' (Andrew Sutton). Peto was also known to select its children, excluding those with severe mental handicap, and reject 10 per cent of its intake after the first two years.
I myself was told by the principal, Dr Maria Hari, when I visited the Peto in May 1988, that although official statistics claimed that between two-thirds and three-quarters of the children left the Institute 'orthofunctional' - able to lead normal lives - the proportion that subsequently went on to lead normal working lives as adults was very much smaller. In Hungary, doctors said children often 'failed' after leaving the Institute.
Further scepticism was based on the difficulty of establishing a proper control group. When I talked to a neurologist, Professor Patrick Wall of St Thomas's Hospital, he confirmed that while there was obviously a need for a properly controlled study, it would be very difficult indeed to set one up. Children with cerebral palsy may present apparent similarities, but the damage to their brains was likely to be completely different. Purely descriptive accounts of their weak and strong points at any stage did not mean they were necessarily comparable.
The scepticism of some British paediatricians, physiotherapists and educationalists was reinforced by their belief that there was already some very good and successful work being done in this country, and that to divert large sums of money to one project with a questionable scientific basis was not the best thing to do.
There was another fear expressed: that to encourage vulnerable parents to believe their children might be miraculously cured was unkind. Against this, I have noticed that parents show a remarkable capacity to adjust their expectations over the years and mercifully forget their earlier hopes. Those who take their children to Lourdes expecting a miracle, for instance, often come back convinced that there has been one, although no one else can see any change. What has changed is their attitude.
My impression of the parents whose children were involved
in the Birmingham Project - a brave, admirable group they were - was that they did like and trust the Peto Institute. They also frankly said that they enjoyed being involved in an adventure. Instead of simply being stigmatised as unfortunate, they became almost heroic figures.
Other parents have had varied responses to Peto, but just about everyone who went there found it a very attractive place. It offered a source of inspiration, a comfort, a faith to people who were suffering: seeing some children who had learned to walk, they believed their own children would do the same. It also offered a unified system. The sheer hard work, the order, the idealism and self-sacrifice displayed by the conductors - as well as the orderly and highly motivated activities of the children - all this presented a striking contrast with the long waits at clinics, the short day of the British special school, and the sense of muddle, uncertainty and sadness that often hangs about it.
It struck me that there was even an implied criticism of our whole society underlying some of the praise for Peto methods, training and atmosphere: we tolerated sloppiness and let our children be 'lazy' (I heard a parent use this word). The Hungarians didn't. Communist methods - group work, authoritarianism, very large demands on the conductors - were strangely appealing to capitalist parents.
I had reservations when I watched large groups of very small children institutionalised in rooms with high windows, following almost military-style routines, and British children crying and exhausted by the hours of physical effort they were asked to make.
Still, my clear impression is that the parents liked the fact that their children were taken away from them and put into the hands of conductors for very much longer periods than they would be in Britain. This is not because the parents don't love their children, but because they are worn out by the demands made on them, the slavery - not too strong a word - involved in giving proper care without proper support. It is a point that badly needs to be addressed in this country.
I was also worried by Dr Hari's vehemently expressed loathing of the wheelchair. She said it was terrible to be tied to one, and I have noticed that parents have said again and again that it is the idea of their child in a wheelchair that they find unacceptable. All the English parents started with the belief that their children would learn to walk - it was not walking that seemed most terrible to them. Yet since wheelchairs are essential to many people - victims of war, accidents, strokes, as well as paralysed and handicapped children - it seems odd to single out the wheelchair as a symbol of horror. Better surely to improve its design and make it into a decent, even attractive, accessory. When I was able to buy my own son a Californian wheelchair, it changed his life because it was so good to handle; it changed my life, because I could fold and lift it without strain; and it changed the attitudes of everyone he met, because it looked streetwise, more like a bicycle than an invalid vehicle.
Peto itself, to which I have not returned since 1988, is said to be changing even as its methods are being borrowed here. One parent, whose daughter went there for a year, says it is no longer the place it was: 'The goose that laid the golden eggs has been killed,' she says, meaning that the methods have been diluted by the enormous influx of foreign children, and that the end of the Cold War has allowed the clever young conductors to leave. No longer obliged to work in Hungary, and offered tremendous incentives to go elsewhere, they are departing.
This mother is still grateful for the work they did with her child. But she now has drastically lowered her expectations for her daughter's future. It doesn't look as though she will be able to walk more than a few steps without help. I asked her whether, since she is an exceptionally intelligent person, she had not looked into the scientific basis for the Peto method, and some account of its long-term results, before she took her daughter there. Did she not ask, for instance, where all the 'orthofunctional' adults, who should be stepping forward to testify to the efficacy of the system, are? But she answered that she had never thought to put such questions. She went as a mother, she said, not as a scientist.
THE results of the Birmingham Project, just announced, indicate that the Peto method works no better than British methods: when compared with children with matched special needs in the control group in Manchester, there was no evidence that the Birmingham children would achieve better rates of progress. Peto adherents are claiming that the research itself did not have a proper scientific basis, which may well prove to be so. But if it is, it is extraordinary to find that the Government is already committed to putting pounds 5 million into a new international training centre at the Peto to train more British conductors and accommodate more British children.
This training rests on a system which has never been explained in scientific or medical terms, even by its founder. Meanwhile, research into treatment of handicap that is not tied to conductive education still suffers from lack of funding in Britain. It may be that any research, any funding, is better than none. All the same, what we have seen is a skilfully managed pressure group, encouraged by a highly emotional and dubiously scientific television film, pushing the Government into making expensive gestures to placate the pressure group before they have scrutinised the results of the research they funded. Now the results are here, it looks very like a major blunder.
Wouldn't it be better to spend money steadily to improve services in Britain? For example: research into prevention and treatment of handicap demands a chair at a university. There should be a structure for pooling information and co-ordinating work done in the different regional centres and schools. Much more should be done to support parents with advice, information, nursery schools, respite care. Wheelchair technology needs to be developed, architects and planners educated to think routinely of the needs of the disabled.
Planning for long-term provision for the handicapped would help with that worst parental nightmare, the future. The adult disabled have claims as great as children, but they are overlooked: they are not found as charming by the media. Really standing up for Joe must mean, not a miracle cure, but sitting down to some serious thinking about priorities.
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