Health: Who will speak up for the children lost for words?: Annabel Ferriman explains how NHS reforms threaten a residential speech therapy centre

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Indy Lifestyle Online
FIVE-year-old Christopher Taylor will describe with great pride all the presents that he received for his birthday. Unfortunately, at the end of the list the listener is none the wiser. What sounds like an 'elephant and eaties' turns out to be an 'ambulance and sweeties'.

Christopher has a rare, poorly understood condition known as dyspraxia, in which sufferers cannot properly control the muscles of the mouth to form the words they want to say.

Children with the disorder suffer loneliness and frustration because they cannot tell their mothers what they want, nor play on equal terms with other children. Because of their difficulties with co-ordination, they cannot even enjoy the simple pleasure of licking an ice-cream in the summer without tremendous effort.

Christopher has been receiving intensive speech therapy from the Nuffield Speech and Language Unit, a remarkable residential centre in Ealing, west London. As a result, his speech has radically improved. However, the unit is threatened with closure because of NHS reforms, which make it difficult to obtain funding. In future, children like Christopher may not get the help they desperately need.

Even before Christopher's second birthday, his mother, Louise, knew something was wrong. 'He was not keeping up with his peers,' she says. 'By three-and-a-half, he was just pointing at what he wanted and saying 'er, er', to ask for it. By the age of four he only had four words: 'Mummy', 'Daddy', 'and' and 'me'.'

No one knows what causes the disorder, which results in poor co-ordination of the muscles of the lips, palate and cheek. It is sometimes found to run in families, suggesting that it might have a genetic component. Christopher's father, Michael, had to have speech therapy until he was 11 and still often cannot articulate the word he wishes to use. The condition is not due to muscle paralysis or any general mental handicap, but is thought to be caused by a defect in one particular part of the brain.

In other ways, Christopher was advanced for his age. At three years old he was able to complete jigsaws with 100 pieces. 'He would just plod his way through them,' says Mrs Taylor. 'But it was a lonely existence.'

Now, although many of his words are unclear, Christopher can talk in sentences and usually, with considerable effort, make his wishes understood. 'He was able to tell me what he wanted for his birthday,' says his mother.

The reason for his improvement has been his attendance at the Nuffield centre, which caters for children with dyspraxia and other serious speech disorders and is part of the Royal National Throat, Nose and Ear Hospital, London.

The dozen children who live in at the unit from Monday to Friday receive an education tailored to their needs, with two or three speech therapy sessions a day. Outside the unit they would, if lucky, probably receive one session a week.

During their two-year stay at the centre, between the ages of four and six, their speech often improves in leaps and bounds. 'These children have to learn to speak at a very conscious level, instead of just picking it up as most children do,' says Claire Wright, the unit's headteacher. 'Without the appropriate level of help, they would be totally excluded from normal life. They would communicate by physical means and develop behavioural problems.

'We hear about what a difficult time they have. One of our mothers said she was in a supermarket recently when her child started screaming with frustration because he wanted something and could not make himself understood. Someone passing said that what he needed was 'a good smack'. What he really needed was someone patiently to go through all the possible things he might want.'

This small but effective unit is threatened with closure because its work straddles the worlds of health and education, meaning that it does not fit neatly into the new businesslike NHS, the advantages of which are trumpeted by Virginia Bottomley, the Health Secretary.

Until 1991, when the NHS reforms were introduced, the unit was funded by the Royal National Throat, Nose and Ear Hospital. Children were referred by specialists and GPs from all over Britain. With the advent of the NHS internal market, the hospital became a trust, subject to the disciplines of the marketplace. As a result, every patient now has to be paid for by means of a contract between the hospital and his or her health authority.

The cost of keeping a child at the unit is pounds 34,000 a year and health authorities from which the children come are balking at the price. They have been told by the Department of Health that they should turn to local authority education departments for help with the burden, but there is no tradition of co-operation between the two types of authority, and health authorities seen unable or unwilling to extract the cash.

In other cases, the health authority is willing to pay only if the child's 'statement' of needs, drawn up by the local education department, says categorically that he or she must go to this particular unit and that none other is suitable. All parents of children with special needs are entitled to a 'statement', but most are vague and do not normally name a particular unit.

'The problem is that we cannot get health authorities and education departments to talk to one another,' says Mrs Wright. 'We asked the Department of Health whether the unit could be paid for directly out of central funds, to simplify things, but they refused. It is a desperate problem, because even if the unit is short of only one child, it cannot balance its books. If this unit were to close, I would question society's whole commitment to children with special needs.'

Mrs Wright warns that closure would mean the loss of an irreplaceable service which has taken several years to develop. 'That expertise would disappear, and I doubt if we could ever bring such a service together again,' she adds. 'For this population of children, closure would spell a life of misery. It is horrific not being understood and not being able to communicate.'

It is not known exactly how many children suffer from dyspraxia, but specialists believe that about 5 per cent of pre-school children need some help with speech and language problems and about one in 1,000 need the sort of intensive help that a unit like the Nuffield centre can offer.

'If these children are not helped early, they often develop serious behavioural and emotional problems later, including bed-wetting,' says Dr Dianne Lim, consultant audiological physician at the Royal National Throat, Nose and Ear Hospital. 'They also get reading, writing and spelling difficulties.'

An example of how a child affected by dyspraxia cannot make him- or herself understood occurred recently when one of the children, Gary, was trying to get his mother to buy him the same type of cereal he was given at the unit. His mother simply could not understand his request and bought pancakes, when what he wanted was bran flakes.

After strong protests from parents, North East Thames Regional Health Authority said in April that it would support the unit for one more year and fund those children who are already being looked after there until their stay ends, but that there will be no money after that.

The reprieve means Christopher can continue to attend the unit; but the Taylors, who live in Westcliff-on-Sea, Essex, are particularly anxious that it should not close because their younger child, Rachel, aged two-and-a-half, suffers from the same condition. 'She cannot say one word and gets terribly frustrated, throwing tantrums,' says her mother.

'I don't think it should remain open just for my children, but for any child with the problem,' Mrs Taylor adds. 'I don't see how they could close it with a clear conscience.'

(Photograph omitted)

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