§ 12.16 a.m.
§ Mr. Peter Hardy (Rother Valley)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.
843 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 844 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.
845 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 846 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 847 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 spoked 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 848 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 849 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 850 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.
§ 12.31 a.m.
§ The Under-Secretary of State for Health and Social Security (Mr. Eric Deakins)I am grateful to my hon. Friend the Member for Rother Valley (Mr. Hardy) for the careful and considered way in which he has approached this most difficult matter tonight and for this opportunity to reply.
I am keenly aware of the deep concern which he feels about this tragic case and of which the correspondence which in recent weeks has passed between him and my right hon. Friend the Minister of State responsible for health on this subject is ample evidence. No one could listen unmoved to my hon. Friend's account of the very sad circumstances in which Mr. and Mrs. Hoden and their three children now find themselves.
I should like to preface my reply by expressing my deepest sympathy to Mr. and Mrs. Hoden and their family and by paying tribute to the courage and determination which they have shown in refusing to buckle under the misfortunes which have befallen them in recent years and their determination to adopt a constructive role in a situation in which some might have been tempted to despair.
Before turning to the details of the case, I should like to say a few introductory words about the Lawrence-Moon-Biedl syndrome. The syndrome was first described by Lawrence and Moon in 1865 and further delineated in the 1920s by Bardet and Biedl. It is an uncommon inherited condition. The principal manifestations are obesity, hypogenitalism, mental retardation, extra digits, and retinitis pigmentosa.
Retinitis pigmentosa involves slow degeneration of the retinae of both eyes, which starts in childhood and often results in blindness in middle age. The first symptoms may be night blindness—the inability to see adequately in darkened conditions—for several years before any pigment is visible in the retinae. The sufferer's field of vision then begins to 851 narrow, but the ability to see in the central field—"tube vision"—can be retained until middle age. The syndrome is a congenital one: parents of affected children may be carriers but may not themselves exhibit any features of the condition.
As I said, the syndrome is an uncommon one, but it is difficult to give any precise figures on incidence. In recent years, new registrations, as blind or partially sighted, of children with retinitis pigmentosa in all it various forms have been fewer than 20 a year. A doctor may suspect the possibility that a child could be suffering from this syndrome from one or more of the following symptoms: if there is a family history of the condition; if the child is born with extra digits; if the child's development is slow, and if he develops obesity and has difficulty in seeing in the dark; if the visual field reduces gradually; or if pigment is seen in the retina on ophthalmoscopy. The extent of abnormalities may vary considerably in different members of the family, making diagnosis difficult, particularly in the early stages. Sadly, there is no known effective treatment for this condition.
At this point, perhaps I should make it clear that the Lawrence-Moon-Biedl syndrome is only one of a number of conditions which give rise to retinitis pigmentosa. Research into the group of diseases in which pigmentary degeneration of the retina arises during childhood or early adulthood is at present being undertaken by the Institute of Ophthalmology.
Let me now turn to the Hoden case itself. The matter first came to my right hon. Friend's attention following the receipt of a letter dated 25th April 1978, from my hon. Friend, with which he enclosed a letter, dated 3rd February 1978, from Mrs. Hoden to the area administrator, Rotherham AHA, together with a detailed account, of the same date, of Mrs. Hoden's case, ably prepared for her and her husband by Mr. R. L. Payne, secretary of the Rotherham community health council, to which Mrs. Hoden had turned for assistance.
These papers gave case histories of Mr. and Mrs. Hoden's three children—Tina Jane, 16, Dianne, 14, and Barry, 12. Mrs. Hoden described how Tina was born with extra digits—subsequently removed —on her hands and feet. She had regular 852 eye tests, started to wear glasses at an early age, but attended ordinary school from the age of five. She started to fall behind in her school work at the age of six and eventually was transferred to a special school.
Dianne, too, was born with extra digits, subsequently removed when she was 2½. She attended ordinary school from the age of 4½ years, had trouble with her eyes, fell behind with her school work and was transferred to the same special school as Tina. Barry was born with extra toe digits and a talipes—or "club foot". When he was a baby, he also contracted cerebral spinal meningitis and had several operations on his foot. He was educationally more retarded than his sisters but eventually moved to the same school as his sisters.
Mrs. Hoden went on to stress that all her children had throughout their lives attended eye clinics as necessary, and described how on 18th June 1977 she was told by Dr. Bannerjee, at a school eye clinic at the Ferham clinic in Rotherham, that her three children were suffering from "night blindness" and needed appropriate education.
Mrs. Hoden described her sense of shock when, on 1st November 1977, Mr. Maw, consultant ophthalmologist at Doncaster Gate hospital, Rotherham, informed her that all three children had retinitis pigmentosa and would eventually become totally blind. Mrs. Hoden concluded by making a number of points: she wanted to know why she had only now been told about this diagnosis when, so she believed, it had appeared on one of the children's medical records at a much earlier date; she also maintained that the failure to diagnose the condition earlier meant that the two older children had missed valuable years of education at the Henshaw school for the blind in Harrogate, where, since 20th February, all three children have been pupils as weekly boarders.
Mrs. Hoden also wondered how the eyes of three children of different ages could be affected by retinitis pigmentosa at the same time, and why the diagnosis was not made much earlier, particularly as all three children had attended eye clinics regularly throughout their lives. Mrs. Hoden concluded by asking for a formal inquiry into the case, a request 853 which my hon. Friend endorsed in letters, both dated 1st May, to the administrator, Rotherham AHA, and to my right hon. Friend respectively.
Following inquiries made on my right hon. Friend's behalf locally, the area administrator, Rotherham AHA, wrote to my Department on 26th May—and my right hon. Friend wrote to my hon. Friend on 13th June in similar terms—to say that the AHA chairman, on behalf of the AHA, had instructed the officers to assemble all the known medical information on the Hoden family, and that once this had been completed a report would be made to the AHA so that the members could decide whether to hold a formal inquiry.
The area administrator also enclosed a copy of the note of a meeting held between Mr. and Mrs. Hoden, Dr. Maw, and representatives of the health and education authorities and the community health council on 21st April. He also enclosed a copy of a letter of the same date-26th May—to my hon. Friend, which conveyed much the same information and confirmed that the diagnosis of retinitis pigmentosa was first made in all three children in June 1977 by Dr. Bannejee at a school eye clinic in Ferham clinic, and that the children were referred to Mr. Maw, consultant ophthalmologist, who confirmed that diagnosis.
At the meeting on 21st April already mentioned, I understand that Mr. Maw gave a detailed account of the three children's ophthalmic history. He indicated that originally three children had "nystagmus" commonly referred to as "wobble" in the eyes, together with a squint, and this had been the main condition for which the children had been receiving treatment over the years. It was not until June 1977 that Dr. Bannerjee at the school eye clinic detected signs of pigment on the retina of the three children and, according to Mrs. Hoden, told her that the children were suffering from "night blindness".
Mr. Maw said that "night blindness" was in fact retinitis pigmentosa, and that Dr. Bannerjee must have used the lay term "night blindness" when describing it to them. Dr. Bannerjee had then referred the three children to Mr. Maw, who, because of the long waiting list, had 854 not been able to see them until November. In answer to a question from Mrs. Hoden whether it was possible for retinitis pigmentosa to be detected at the same time in three children of different ages, Mr. Maw said that the stage of pigmentation in the three children was different—it was more evident in the oldest child and scarcely detectable in the youngest child.
At that meeting, Mr. Maw also explained to Mr. and Mrs. Hoden that it was only in November 1977 that he had for the first time seen the three children all together as a family and had observed certain features common to all three. It occurred to him then that the condition from which the children were suffering was the Lawrence-Moon-Biedl syndrome, of which retinitis pigmentosa is one manifestation. In addition, Mr. Maw suggested, the children already had a quite separate eye condition—nystagmus—for which they had been receiving treatment over the years. and that it was in the course of a routine examination that pigmentation of the retina had been detected in the oldest child, with lesser symptoms apparent in the second child and scarcely detectable symptoms in the youngest child. The condition could not have been detected earlier by the conventional means available.
Mr. Maw suggested to Mr. and Mrs. Hoden that the children should be seen as a family together by someone who would be able fully to assess their condition and to help them to prepare for and cope with the future. Mr. and Mrs. Hoden agreed that the children should be referred to Dr. William Hosking, consultant paediatric neurologist, who had recently been appointed to the Ryegate centre for children, Sheffield, and who was very willing to see them.
Apart from a further exchange of correspondence between my hon. Friend and my right hon. Friend, which culminated in my right hon. Friend's letter of 27th June, and which need not detain us now, this brings us up to date. My hon. Friend may have been hoping at this stage in my reply I might have been able to announce that the AHA has finally decided to hold a formal inquiry. I must say straight away that I am not in such a position and that the situation remains substantially the same as that reported in my right hon. Friend's reply to my hon. Friend's recent Question on 855 the subject, namely, that once all the known medical information on the children has been assembled the AHA will decide whether to hold a formal inquiry.
I understand that all three children have been seen by many different agencies both in and outside Rotherham during their lives, and so the assembly of their medical records and preparation of a chronological synopsis of all the treatment which the children have received since birth is proving to be a very complex and time-consuming task. I understand that at its June meeting the AHA supported the chairman's action in putting this task in hand. I also understand that the AHA hopes to complete assembly of the material in the next week or two, and that it will then be sent to Trent regional health authority, to which a report has already been made in accordance with the normal procedures. The RHA then intends to send the summary and case notes to an independent assessor, who will be asked to advise the two authorities about the management of these cases. In the light of the advice given by the independent assessor, the health authorities will be able to decide the form of any inquiry and its terms of reference.
I know that my hon. Friend is impatient to have the health authorities' decision on this matter. That is very understandable. Nevertheless, I hope that he will accept what I have said about the complexity of the task which the health authorities are undertaking and the assurance which they have given me that they are both very much aware of the need to come to a decision as quickly as possible. I am sorry that I cannot be more helpful on that score, but it would clearly be inappropriate for me to comment further at this stage when the health authorities are still assembling the facts and have yet to reach conclusions on them. I shall ensure that my hon. Friend's statement of the facts are immediately drawn to the authorities' attention.
To return to the Hoden children, I understand that, as arranged, Dr. Hosking saw the three children at the Rye-gate centre in Sheffield in 17th May and that a copy of his report, dated 25th May, to Mr. Maw was sent to Mr. and Mrs. Hoden. I understand, too, that although Dr. Hosking has made no further 856 arrangements to see the children, since they are at present at school in Harrogate, he has discussed with Mr. and Mrs. Hoden the need for help in the future as the children grow up, though he is confident that, in the first instance, this help will come from or through the school. He has, however, offered to help in any way he can, if Mr. and Mrs. Hoden wish him to do so.
Mr. Maw, the consultant ophthalmologist who was responsible for the children, has been consulted about their further medical treatment and has indicated that in his opinion the efficacy of advertised treatments for retinitis pigmentosa in Switzerland and Russia—a subject I will go into in more detail in a moment —are not generally established, proven or accepted in the rest of the western world or even in those two countries. He does not, therefore, subscribe to such treatments and does not want to press for NHS resources to be used to refer patients to these centres. His view is that resources are better used in doing everything possible to educate and train such patients in the light of their disability.
To this end, once Mr. Maw had seen the children last November and recommended appropriate education for them, their details were forwarded by Rotherham AHA to the education department which in turn forwarded them to the Henshaw school for the blind in Harrogate. I understand that at the school the children are under the care of the school's consultant ophthalmologist and that their general medical care will be the responsibility of the school's medical practitioner or their own general practitioner. I am glad to say that, in addition to Dr. Hosking in Sheffield, Dr. Mary Myers—the consultant in mental handicap in Rotherham—has also promised support to the children as and when required. In recent months the Hoden family has also received support and advice from the Social Services Department's specialist social worker.
I understand, too, from my right hon. Friend the Secretary of State for Education and Science that all three children are making good progress at the Renshaw school for the blind in Harrogate, and that, in particular, Tina has gained a preliminary certificate in Braille in a single term, which is considered to be very good indeed. I also understand that 857 the education authority is maintaining close contact with the school with respect to these three children.
Let me now turn to the more general questions of research into retinitis pigmentosa and its treatment, because I know that many people in this country, including my hon. Friend and Mr. and Mrs. Holden, are deeply concerned about what is being done for sufferers from this distressing disease. Although there are no reliable official figures for retinitis pigmentosa sufferers, informed estimates suggest that there are between 10,000 and 25,000 in the United Kingdom. Many sufferers are young people. Many have families who, like the Hodens, are rightly anxious to explore every possible path that may lead to improvement in the condition. It is against this background that the issues have to be examined.
As my hon. Friend, the Under-Secretary with responsibility for the disabled said, in replying to the Adjournment debate on 13th June, one of the major problems, which clearly has its effects on all research into the condition and its treatment, is that retinitis pigmentosa is not just one disease. It is a term used to denote a group of diseases in man which are clinically similar but have different modes of inheritance and almost certainly represent different metabolic disorders. The group of diseases is characterised by progressive retinal degeneration and is accompanied by migration of pigment-containing cells into the retina. There is no accurate estimate as to how many separate diseases are included under retinitis pigmentosa, but there are probably well over 10. The different forms vary greatly both in the time of life when the disease becomes apparent and the rate of its progress and other disabilities with which it may be associated.
My hon. Friend is probably aware that the Medical Research Council set up a working party to look into research into all aspects of retinitis pigmentosa. Among its conclusions the working party, which reported last year, highlighted two basic problems. It said:
Our understanding of development and pathological reactions of the retina is so incomplete that the mechanisms of the disease at present must be largely speculative".and,The delineation of the clinical picture of the human disease is still poor".858 It is in the light of this present unsatisfactory state of knowledge that research into the disease and its treatment must be regarded. In fact, throughout the history of the study of retinitis pigmentosa, treatments have emerged which looked promising at the time but later dropped out of favour. Obviously this can increase the distress of sufferers from the disease and their families, whose hopes for a successful treatment can be raised and then dashed.There has been a great deal of publicity, particularly in the past few months, about two different forms of treatment for retinitis pigmentosa, one carried out at the Opos eye clinic in Switzerland which has already been referred to tonight, and the other at the Helmholtz eye diseases research institute in Moscow. Many hon. Members have written to my right hon. Friends and myself about these treatments, often in connection with their constituents who are themselves sufferers or the relatives of sufferers, I am afraid that we have not been able to reply in encouraging terms—notwithstanding some news stories that patients have been treated there, apparently with success. May I say at once how pleased I am that some of the patients who have been treated in Switzerland or Moscow have returned with the feeling that their condition has indeed improved, but I think that for the benefit of all sufferers, including those who are considering trying to obtain these treatments, we should examine closely the currently held opinions of the great majority of ophthalmologists in this country.
Let me turn first to the treatment at the Opos clinic. I understand that the treatment consists primarily of implants on to the back of the eye of human placental and fetal tissue. In fact this form of treatment has been tried extensively throughout the world in past years but has been generally discarded. My advisers are not aware of its continued use anywhere.
§ The Question having been proposed after Ten o'clock on Thursday evening and the debate having continued for half an hour, Mr. SPEAKER adjourned the House without Question put, pursuant to the Standing Order.
§ Adjourned at fourteen minutes to One o'clock.