§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Kirkhope.]
11.34 pm§ Ms. Marjorie Mowlam (Redcar)I am pleased to raise in this Adjournment debate the question of the early diagnosis of deaf children. It is important that there should be maximum public awareness of the problem. I hope that tonight's debate, in conjunction with last night's programme on BBCI entitled "The Visit" by Desmond Wilcox, will help to highlight in the public mind the importance of the early diagnosis of deafness among children.
First, I want to give to the House the apologies of my right hon. Friend the Member for Stoke-on-Trent, South (Mr. Ashley), a well-respected Member of the House who is also president of the Royal National Institute for the Deaf, who wishes to support my arguments tonight but is unable to be here to do so in person.
The early diagnosis of deaf children, the prescription of hearing aids, the immediate provision of education and speech training are essential if children with hearing loss are to develop communication skills and not be severely handicapped as a result of deafness.
The central message of tonight's debate is the need to establish efficient screening, diagnostic and referral services and the publication of the outcome of the results. The provision of those services is an essential pre-condition for improvement in the education of deaf children.
Arguing and campaigning for the provision of those basic services is not new. The National Deaf Children's Society and the Health Visitors Association have been campaigning for years for an increase in screening and the publishing of the results. For example, in 1979, the society held a conference in association with the department of audiology at Manchester university on early diagnosis, and in 1980 it published a booklet entitled "The screening of hearing impaired children" setting out the problem and suggesting guidelines for improvement.
Later research, particularly a paper on the subject in the British Medical Journal in 1982 entitled "Auditory screening of schoolchildren—Fact or Fallacy" suggested that in one area the
school health service programme of auditory screening was ineffective and unreliable.I know that there is some debate about that study because of the small sample involved, but the research emphasises the need for national screening and that the results should be published.I emphasise that the point of this Adjournment debate is to put high on the public agenda the need for parental awareness of the importance of the early diagnosis of deaf children. We are in no way trying to minimise the hard work and effort of the health visitors and the majority of local authorities who do all that they can to discover deafness at an early stage.
It is easy, as we have witnessed in many policy areas, particularly in the past decade, where a problem is defined and responsibility for the implementation of that policy is given—in this case to a regional health authority—for the adequate funds to perform that task not to be provided. 1208 The responsibility is delegated, but the funds needed to do the task properly are not available. Therefore, the attempt to achieve adequate diagnosis is left to a later stage.
I make it clear that I make no criticism of health visitors or, for the main part, of the regional health authorities. I have raised the subject on the Adjournment at the wish of a family in Redcar, in my constituency. In that, there is no criticism of Cleveland county council, which has one of the best records in the United Kingdom for educational facilities for disadvantaged groups.
What primarily concerns me is that much of the research that I have read and my own experience with my constituents is that there are many problems relating to individual children which cannot be ignored. Despite the hard work carried out by many individuals, it is still clear that all is not well and that many hearing-impaired children are being diagnosed far later than they could be. The National Deaf Children's Society, as the only national charity specially concerned with deaf children and their families, knows better than anyone the extent of the problem. It warns of the far higher incidence of hearing loss in children than we are aware of which remains undetected and untreated. Figures are difficult to come by, but, based on the survey resear4 available, a conservative estimate of more than 500,000 children is not unreasonable.
As I am sure the Minister is aware, the main cause of the hearing problems is glue ear. The condition is thought to be caused by a malfunction of the Eustachian tubes which results in a build-up of fluid in the middle ear. In many children, the condition resolves itself, but if it is prolonged it can cause serious learning difficulties. About one in three children has glue ear, which is the equivalent of saying that for one in three children listening is experienced as if they have their head in a bucket of water. That is the impact of having glue ear. What concerns me is that late diagnosis means that those children are handicapped in terms of their learning ability and they work at a disadvantage that will put them back as their learning experience goes on in school. That concern makes early diagnosis essential.
The existence of a hearing problem should not, if awareness is high enough, be difficult for parents or teachers to detect. As we all know, if children have a hearing problem, they may appear listless, they may be inattentive in class, they may seem to be disobedient or wilfully misunderstand and their behaviour and responses may be erratic. Speech difficulties are another good indicator, as are reading problems, especially those associated with phonetics. General learning difficulties can arise from prolonged hearing loss.
Asking for this Adjournment debate was the result of the hard work and persistent campaigning of one of my constituents in Redcar, Kathy Robinson. It is difficult to pay tribute to her work and she would not like it. She has worked hard for many years to publicise the plight of deaf children. She has especially campaigned for simple and straightforward improvements in the diagnosis of deafness among young children. I know from talking to her how frustrated she gets because what she asks for is so minor. However, in some senses, that is only one of the many frustrations that she has gone through in her life. The first frustration was the late diagnosis of Sarah, her first child, as deaf, followed 18 months later by the late diagnosis of her second child, Joanne. The learning difficulties compounded by late diagnosis are all too apparent to 1209 anyone who stops to think. The fact that months of learning have been stopped by people not being aware that the children were deaf has caused much frustration to Kathy Robinson and her husband Mick, and to other parents.
The best way to put the matter is in Kathy Robinson's own words. She says:
Sarah was diagnosed as deaf at 21. She was almost 3 before she knew she had a name or that people had names. She was a nobody in a world of other nobodies. In time she began to recognise that the sounds she heard, Eh-Ah, meant her, Sarah. It was a long time to wait three years. And what was it like for her all that time, and afterwards as well—when she couldn't say she had a pain in her tummy because she didn't know it was a pain or that she had a tummy? Once she was smacked for not coming when she was called. Why didn't they know she couldn't hear? Because she was bright and alert —and her record said hearing normal.We must think not only of the frustrations experienced by parents but of that felt by the deaf children themselves. The Robinson family got through those early days, tough and traumatic though they were, by persuading one of the local schools, Sacred Heart—thanks to Cleveland health authority—to accept Joanne and Sarah as pupils. That meant that they were part of the community from an early age.Kathy Robinson has also worked hard to publicise the plight of deaf children. Her book "Children of Silence" was published by Penguin. She says that it took her seven years to write, along with 16 rejections, but she was determined that others should know about the world of childhood deafness. The family's struggles were portrayed very well on the television last night.
The family have not given up, although Joanne and Sarah are now moving on to higher education and, in a sense, beginning to grow apart from them. Kathy is now campaigning to raise £9,700 to introduce a deaf tutor into a hearing school for five to seven-year-olds. She is also becoming something of a campaigner on behalf of sign language. I am sure that she will persuade me to take it up soon: I learnt the basics as a girl guide, and I think that the pressure is now on for us to learn much more than that.
Yes, children's hearing is tested when they are approximately eight months old; yes, it is tested again when they are at primary school. But the years lost in between are years in which a deaf child, through late diagnosis, may lose many years of educational advantage in the future. The voluntary sector is doing an excellent job in trying to make the public aware of the issues: The National Deaf Children's Society now provides postcards and offers a good deal of information, as does the General Practitioners Council for the benefit of doctors. Individuals such as Kathy Robinson and her family continue to campaign. Now, however, it is time for the Government to take some responsibility and to provide a greater chance of early diagnosis of deafness in young children.
We have two simple requests. First, we want a national policy, recognised in law, that would provide a standardised approach to screening. Records of screening should be available at national level, the results being monitored and published annually to show the percentage of children tested, referred for diagnostic assessment and shown to have a hearing loss needing medical and/or educational treatment. That would give us the picture 1210 nationally: it would show us what is being done, and would allow us to compare one authority or area with another.
Secondly, we ask for the introduction of compulsory training for all GPs who undertake screening as part of child surveillance. As we all know, GPs work very hard, often under considerable strain, and the combination of work load and time constraints means that they do not always have the chance to listen to patients' worries, as they would like. We therefore ask for the option of standard procedures for referral or open referral for patients. The need for patients to self-refer, or have additional referral, is very great: tragically, 41 per cent. of deaf children pass their first hearing tests. That is what worries parents such as the Robinsons so much.
I have cited the Robinsons as an example of families who fight and conquer the problems of deafness. Now Sarah and Joanne are making their own way in the world, despite the handicap that no one can see. In a sense, that will become marginalised if the basic principles and approaches to the condition do not change. The changes that I have outlined are simple, the costs would be minimal, and the result of a correct early diagnosis of deafness is so crucial to a child's later ability to learn and participate in society that I hope that the Government will consider implementing my proposals.
§ The Parliamentary Under-Secretary of State for Health (Mr. Stephen Dorrell)The hon. Member for Redcar (Ms. Mowlam) follows her predecessor as Member of Parliament for Redcar in raising this matter on the Adjournment of the House. I think that Mr. Tinn raised it on three separate occasions. Members of Parliament for Redcar traditionally draw attention to a matter that undoubtedly should be an important national health service priority, in terms of its responsibility for child health.
Earlier today I heard about the experience of a grandmother whose grandchild had suffered a hearing loss that had not been diagnosed as quickly as it ought to have been, with the result that the child's mother thought that her child was, in her own words, being defiant and that she would have difficulty in handling the child. The fact was, however, that the child's hearing difficulty had not been diagnosed soon enough for the parents and those outside the immediate family to take remedial action. The hon. Lady was right to stress the importance of ensuring that there is effective screening for deafness in young children at the earliest possible time. That commitment is not disputed. We entirely endorse the hon. Lady's commitment to that objective and we have taken steps towards achieving it.
I hope that I shall not appear to be complacent if I refer to measures that we have taken, but that is not to suggest that everything that should be done has already been done. Further action can be taken in order to achieve that objective, but the earliest possible diagnosis of deafness in children is a shared objective. Allowance must be made for it and treatment must be offered that results in the child suffering no long-term effects. Delayed diagnosis can result in long-term damage to a child's hearing. There is a definite clinical reason for early diagnosis. The commitment, I repeat, is clear and is not in dispute.
1211 It is legitimate for me to draw attention to an element that we have included in the new general practitioner contract that has been in operation for 15 months. We took steps to extend the involvement of GPs in child health surveillance, in the belief that, through their regular contacts with the parents, they are particularly well placed to pick up concern about children's health. The new contract, introduced in April 1990, provides for a special payment to be made to eligible GPs to undertake child health surveillance work, in collaboration with health visitors. Eligibility is determined by training and by the experience of the GP in child health. That answers, at least in part, one of the hon. Lady's points.
The involvement of GPs in child health surveillance does not come just like that; GPs have to demonstrate competence before they are eligible for the specific payment for child health surveillance work. Therefore, it is a reflection of a GP's competence in child health surveillance. The new arrangements have led to the development of additional training opportunities for GPs to meet precisely the point that the hon. Lady has rightly identified.
So far, some 70 per cent. of GPs within the MIS have been accepted as eligible to undertake child health surveillance because they have demonstrated the necessary competence. To become accredited, many of those doctors will have undertaken updating training, including training in screening for hearing impairments. As a result, many families will now have a choice between the child health clinic and their GP when arranging child health surveillance. Some may find the clinic more convenient, but others may prefer the continuity and familiarity that comes with the established contact between the family and its general practitioner. That is one thing that we have done which demonstrates our commitment to efficient screening.
Another important idea, which perhaps goes some way to meet the hon. Member for Redcar's proper concern to ensure that the issue is constantly to the fore in not only the child's early years and at school but in the interim years, is the development of parent-held child health records. In that way, if the family or the child are seeing health professionals, there is a better chance that the complete health record and the results of every visit to a surveillance clinic or health professional are available.
Record keeping is a vital part of child health surveillance. Often, physical or sensory impairments are revealed only through close monitoring of the child's development over a period of time. However, surveillance programmes are vulnerable to interruptions due to missed appointments or the family moving from one district to another and the records not moving as fast as the family. To underline the importance of records and, equally importantly, to involve the parents in the surveillance work and the preparation of records, there have been a number of local initiatives to introduce parent-held child health records. Recently, a working party led by the British Paediatric Association reviewed the local initiatives and produced a model personal child health record. The record requires the parents to record key events in the child's development—for example, when the child says its first understandable word—and any concerns that they may have about the child's health. The record also contains health promotion advice on subjects such as feeding, immunisation and accident prevention.
1212 The house visitor or doctor uses the record a background to their examination of the child and enters the results of any tests they undertake as well as general observations about the child's development. The research shows that parents and health professionals welcome the use of those records and that they contribute to better co-operation and understanding of the diagnosis of various childhood disabilities. It uses the fact that parents have far more intense exposure to the child and may be aware of problems that they cannot link to a correct clinical diagnosis. However, those incidents can he entered into the child's record so that the health professional can make the necessary linkages.
It is also important to recognise that early diagnosis of deafness is not necessarily as easy as it might sound. It is not simply a matter of attending a clinic and seeing whether the child responds to a particular noise or test. Hearing ability will not be the same from one day to another, particularly in the case of children suffering from glue ear, who, as the hon. Member for Redcar rightly said, make up the majority of children suffering from deafness. To some extent, it is a fluctuating condition. Therefore, parental involvement and surveillance over a long period should not be underestimated if we are to have an effective means of tackling the problem.
The hon. Member for Redcar also asked about the national commitment, which she said that we should write into law, to early diagnosis and giving practical effect to that and the collection of statistics. 1 recognise that on the collection of effective epidemiological information on a nationwide basis we have some way to go before we can produce figures with which we can all be happy and which record accurately and at the earliest possible moment the incidence of deafness in children. The purchaser obligation under the new management structures of the health service places on district managers the obligation that the hon. Lady sought to ensure that priorities are recognised and followed through.
One of the specific issues that must be addressed in all child surveillance work is the link between child surveillance teams in community health departments and in primary health care. I am prone to ask about the difference between community health and primary health. I have asked that question more often than I have received an answer that I found convincing. I am more convinced that it is a distinction without a difference. In future, one of the priorities of health service managers will be to ensure more effective delivery of the old aspiration of a seamless service between the primary health system, which is led by GPs, and the community system, which is the responsibility of the district health authority. By far the biggest difference between the systems is that they are run by two different bureaucracies.
§ Ms. MowlamAs the witching hour comes, I seek a point of clarification from the Minister. He said that he sees some advantage in publishing screening statistics, although there is some way to go, and questioned the need for a statutory base. Would it be fair to say that he sees it as advantageous in the long run and that he would encourage the publication of such statistics, albeit on a regional basis and in a non-statutory way? Is there a willingness to see that in the public domain?
§ Mr. DorrellThere is a willingness to find ways of presenting that information in a scientifically rigorous 1213 manner. The problem is defining the information to be published and ensuring that it is published in a usable form. I strongly support the provision of sufficient scientifically robust information to allow those who are interested to compare the performances of different health districts so that it can be seen which are effective in delivering the objective that the hon. Lady and the 1214 Government share of an efficient early diagnosis system. Once we know which districts are efficient in delivering that objective, we shall be nearer to taking the necessary steps to ensure that the less efficient become more efficient. By raising the subject on the Adjournment, the hon. Lady has demonstrated that commitment and it is shared by the Government.
Question put and agreed to.
Adjourned accordingly at two minutes past Twelve o'clock.