Peter Hardy – 1978 Speech on Lawrence-Moon-Biedl Syndrome

Below is the text of the speech made by Peter Hardy, the then Labour MP for Rother Valley, in the House of Commons on 6 July 1978.

Many hon. Members are well acquainted with tragedy. Each day we learn of the griefs and tribulations which affect our constituents or ourselves. That is why I understand why the Under-Secretary of State is replying to the debate. Perhaps we become so accustomed to responding that the response becomes habitual. But sometimes we encounter circumstances which are particularly dreadful.

This has certainly been the case with my experience of the Hoden family of East Hellingthorpe, Rotherham. The first I learned of this family’s problems was through the local papers. I checked that Mr. and Mrs. Hoden were my constituents and then commenced inquiries into what seemed to be an alarming story. The inquiries convinced me that the alarm was justified.

I called to see the Hodens at their home in the company of Mr Payne, the secretary of the Rotherham community health council, on 29th April. Before I made that call Mr. Payne furnished me with a moving account of the family’s experiences. I wrote to the Minister and the Rotherham health authority and conveyed the Hodens’ strong belief that a thorough inquiry should be held. Mrs. Hoden had written in similar terms to the authority on 3rd February this year.

The area administrator wrote to me on 26th May to say that the chairman had instructed his officials to assemble all the known facts in order to assist the authority to decide whether to hold an inquiry. I understand that the information is still being compiled. I believe, however, that sufficient information is known to allow a decision to be made. But that question has not yet been resolved.

I received a letter from the chairman dated 23rd June which informed me that the information was not yet ready for decision. The Minister might say that I should have awaited a decision. But I did not feel that I could let further months elapse. The pace of administration must not be allowed to determine the speed of representative response.

I regret that matters have not proceeded more urgently. I hope that the Minister will not seek to shelter behind the authority. I hope that what he knows already and what I shall say will convince him of the need to urge that an inquiry is held. It is necessary not to blame individuals or pillory the service but to ensure that lessons are learned.

Mr. and Mrs. Hoden are good and respectable people. Mr. Hoden is a strong clean man and is a mains layer in the civil engineering industry. He is quiet and decent and is an anchor in the storms which have assailed his home. Mrs. Hoden is more articulate, a good ​ South Yorkshire housewife and, as the authority is learning, a determined mother. She has a passionate concern for her children. I am not surprised, just as I am not critical, about the insistent questions which she is asking about her children. The replies she has received have not satisfied her.

The three children are said to be affected by the Lawrence-Moon-Biedl syndrome. Tina is the eldest, born in December 1961. Diane was born in May 1963 and Barry in January 1965. They have been receiving attention for visual difficulty almost since infancy. Tina was born in Listerdale Hospital, Rotherham with extra digits which were removed at Lodge Moor hospital, Sheffield when she was a baby. She was then a patient at the children’s hospital in Sheffield. Both Diane and Barry had similar experience.

Just before Barry was born in 1965, the two girls contracted measles and Diane seemed to develop an eye condition. She was seen at the Doncaster Gate hospital, Rotherham, and was referred for eye exercises and treatment, which included wearing a patch to correct a lazy eye. Later records suggest that nystagmus was diagnosed.

Barry was born in similar condition, again with extra digits, but with the addition of talipes foot. Surgery to remedy this was carried out before he was 11 months old. He then developed cerebrospinal meningitis and was in hospital at Moorgate in Rotherham. Barry was classed as ineducable while in his fourth year. Tina started school at five in the normal way. Eye tests were carried out, but Mrs. Hoden was told little except that the girl was short-sighted.

From about this time Mr. and Mrs. Hoden found that accidents were happening and they could not let the girls out after dark. Questions were asked at the eye clinic but these are said to have brought merely a brisk and officious response.

At the age of seven Tina was said to be falling behind at school and she was later classified as backward and sent to the Abbey special school in Rotherham. Diane was given a similar classification and attended this school from the age of six. Barry, classed earlier as ineducable, made progress and also arrived at the Abbey school.

The children had regular eye tests but the parents were never given any idea that a serious position was developing, until retinitis pigmentosa was simultaneously diagnosed in all three children late last year. Certainly from the period when the eldest girl, Tina, was about nine, the children were often having accidents, slipping off kerbs, bumping into posts, walls, and so on. The attention of the medical authorities was drawn to these incidents but they were told that it was because the children were backward.

Eventually Mr. and Mrs. Hoden requested that the children see another consultant. This consultant, so Mrs. Hoden tells me, said simply that both girls had bad right eyes and that the optic nerve was withering.

By 1977 the Abbey school had become worried since the children were experiencing serious difficulty. Unbeknown to the parents, the school is said to have expressed anxiety. I have spoken to the headmaster and he confirms that the anxiety was serious enough for him to feel that needs seemed to be going unresolved.

In early 1977, the school medical officer was asked to assist. At about the same time I understand that a doctor from the department visited the school for another purpose and met these children. Apparently he is said to have urged that further steps were needed.

In April 1977, Mrs. Hoden learned that the school authorities had contacted the medical authorities, and in June these children saw another consultant. They were told that the right optic nerve had withered and they had night blindness. The case was referred to another consultant. Five months elapsed before this was arranged.

On 1st November last year the consultant, Mr. Maw, saw the three children with their parents. There was great distress when the parents learned that all three were going to be totally blind. Mr. and Mrs. Hoden then discussed the matter with Mr. Maw, who explained the nature of the condition. I understand that Mr. Maw was unaware that no earlier explanation had been given. Perhaps I should add that I am not critical of Mr. Maw. He is an experienced consultant of high standing in our area and he faced a dreadful situation. To have ​ to break such news must have been an ordeal. The ground should have been prepared before.

Mrs. Hoden has asked if the eye condition could be the cause of other difficulties and anxieties and of the series of trials and tribulations which had been experienced.

The Lawrence-Moon-Biedl syndrome was at least suspected by Mr. Maw, as soon as he saw the children together. He observed common characteristics, not merely the visual difficulties. I believe that he wondered whether retinitis pigmentosa was not primary but part of another condition or syndrome, a distinct group of symptoms which form a whole.

The case was then referred to Dr. Hosking, a consultant at the Reigate centre for children in Sheffield. Dr. Hosking confirmed Mr. Maw’s suspicions. Aspects of the syndrome are or were to be observed in each of the Hoden children—extra digits at birth, obesity, the dreadful handicap of retinitis pigmentosa, some deafness, and mental retardation, although as far as deafness is concerned, the girl’s problems appear to be eased now, for only Barry wears a hearing aid.

The Hodens therefore know the worst. As I said, that was very long after the first symptoms were to be observed. To be fair, this syndrome is rare. Dr. Hosking had encountered only two previous cases, but it is a well documented condition, first described a century ago, and I know that one child—one, not three—sadly has had it diagnosed in another area of Yorkshire recently. That child is only seven years of age.

Mr. and Mrs. Hoden do not seem to be critical of the education authority, for they were told that on the children’s records—records which clearly ought to have been more adequate—there was only reference to eye difficulty. That is an example of unsatisfactory communication which my hon. Friend should note.

Early this year the Hodens visited the Henshaw school for the visually handicapped in Harrogate. It was pointed out quite properly that the elder girl, Tina, by now aged 16, should be leaving school, not starting it. I understand that one official present remarked that something had gone wrong somewhere. Something ​ very clearly has gone wrong. The condition—if I may use Mr. Payne’s words, the approach to eventual darkness—had been disregarded.

Since the diagnosis Mr. and Mrs. Hoden have attempted to ascertain the facts. As far as they are concerned there was no hint of gravity of vision until June 1977. There should not have been such delay, such slowness of response, or such inadequacy of communication, before the consultation on 1st November. Perhaps my hon. Friend will bear this in mind when the authority considers its decision.

I know that the Trent region health authority, and our South Yorkshire part of it especially, has been the least favoured area for health provision for a century or more. I know that the Government are set on a course to put that right. But the fact is that while we have below-average waiting lists at our hospitals the Trent authority has 17·4 consultants per 100,000 population, as I learnt from a Question this week, and that compares unfavourably with the highest provision, at North-East Thames, of 26·19 per 100,000. I know that my hon. Friend is determined to get the balance right, but I should like him to be rather less gradual in his approach. Certainly, I hope that inadequacies in consultant establishment have not proved a factor in this case. He might care to comment on that.

The children, all three, commenced attendance at the Henshaw school in February. I have spoken to Mr. Seed, the head, this week. The latest position is interesting. Given earlier classification of Tina as educationally sub-normal, I was surprised when Mrs. Hoden told me that Tina had asked her the other day “Mother, what do I have to do to prove that I am not stupid?” That is not a question an educationally sub-normal child would ask.

Tina is not now classified as ESN. An educational psychologist assessed her earlier this year and said that were it not for Tina’s sight she would have no hesitation in sending her to a normal school. This view seems substantiated by the fact that after 11 weeks at the Henshaw school, Tina obtained a certificate of merit for successfully passing her first ​ Braille test. She can now manage to read simple language in Braille. Clearly, there was a dreadful error in her early classification. That needs to be considered, too. I regret that I cannot say that there is obvious error in educational classification of the siblings, but clearly Tina was wrongly labelled.

Certainly, one can well understand Mrs. Hoden’s anguished cry “Can anyone tell me how in the name of God did three children escape the diagnostic and registration net?” Mr. and Mrs. Hoden insist that they should know, and I believe they have that right. As their Member of Parliament, I feel that investigation is needed.

I have it on authority—and my own observation bears this out—that Mr. and Mrs. Hoden are caring parents. I am not convinced that society has shown sufficient care. I consider that we need to know whether medical, social and educational diagnoses, treatment and arrangements have been sufficiently careful. We also need to know whether there has been adequate communication between the individuals and agencies involved.

Until Mr. Maw’s consultation there was grossly inadequate communication to the parents. Mrs. Hoden maintains her belief that the diagnosis was noted earlier, and does not seem to accept the explanation of the reference to the condition on an attendance allowance application form.

I have already raised serious questions. As I first wrote to my hon. Friend some time ago to express my concern, I hope that he is able to offer comment. Before he does, let me say that South Yorkshire places great store on good neighbourliness. That is shown in this case. In various parts of our area the people have been touched by the Hodens’ experience, and widespread effort is being put into aid for the children. I welcome this evidence of kindness.

It is good to know that there are many Samaritans in South Yorkshire. But, as my hon. Friend will realise, we in South Yorkshire, above all, are entitled to expect that official provision is sufficient. We are not so given to the parrot cry of cutting taxes above everything, for our history leads us to recognise that civilised arrangements are necessary and must be paid for. We are offended by the reality ​ of Mrs. Hoden’s comment of 3rd February to the health authority, “If someone had spoken years ago, my children would have received years ago the help they will now get”. We wish to know why they did not get it.

My hon. Friend the Member for Grimsby (Mr. Mitchell) recently raised the question of treatment for retinitis pigmentosa. I shall not repeat his arguments, but I welcome the Minister’s promise to several of us on the Labour Benches that he will study the cases of people who believe that they have benefited from the Oops clinic treatment. May I ask that this study be carried out with urgency? May I ask that if it reveals that benefit has been conferred, provision of this treatment will be rapidly encouraged? That may offend orthodoxy. However, until the study is complete one cannot ignore the claims of people who feel that their condition is noticeably improved by the treatment. I am uneasy about their claims, for I understand that spontaneous improvement is anyway possible. I understand the official response, but, given their experience, the Hodens cannot be easily reassured.

My hon. Friend may be able to tell me that every possible help will be given to these children in the future. I shall be pleased to hear that. However, I should also like to be assured that the failure in communication, the inadequacies in response and the possible misinterpretations and inaccurate classification apparent in this family’s experience will not be repeated on the scale that has apparently occurred here.

Certainly authority should consider whether it fully understands the public response, for, as I have shown, this case has moved many people in my area.

With my hon. Friend the Member for Rotherham (Mr. Crowther), I attended the East Herringthorpe club on Friday night, when one of the efforts to support this family was under way. I met Mr. and Mrs. Hoden again there. Hundreds of people had come to show their support. Seven hundred pounds was raised in a very short time. The widespread kindness which was exhibited was memorable. But more important and more obvious was the cry that this must not ​ happen again. There was very genuine and very welcome concern.

I trust that my hon. Friend will be able to satisfy those people, will be able to respond to the Hodens’ needs, and will be able to comment appropriately on my questions.