§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Tinn.]
§ 9.22 p.m.
§ Mr. Austin Mitchell (Grimsby)
If I had wanted to grab the headlines or address a packed Chamber, I should not have called for a debate on retinitis pigmentosa. It is not a phrase that trips from everyone's tongue. In my experience it is a phrase of which people fight shy. Those to whom I have mentioned it today have automatically and wittily replied "You what?" or "Say that again". That is a reaction that I am sure accounts for the tumultuous attendance for the debate. If it had only been known that it was about tunnel vision, I am sure that the Chamber would have been packed.
First, I define my terms. Retinitis pigmentosa is a group of diseases whose common feature is a degeneration of the light-sensitive cells of the retina. It is a deterioration that shows itself first in bad vision, impaired vision, loss of vision in dim light, such as in the dusk or in the dark, and goes on gradually to loss of peripheral vision, so that merely the central portion of the visual field remains. That is the tunnel in the phrase "tunnel vision". It is a tunnel which all too tragically can close, resulting in complete blindness in the severest cases.
Between 10,000 and 25,000 people are afflicted by retinitis pigmentosa—between two and five persons in every 10,000 of the population. It is a progressive, degenerative inherited disease. It is not something that one just catches. Apparently it is a Northern disease. It seems to be more common in the North than in the South. There is, for instance, a high incidence of retinitis pigmentosa in Tristan da Cuhna, because of inbreeding in the population. I do not know whether that explains the high incidence in the North, but it is a feature of an inherited disease, and because it is inherited there is no way of escaping it. That is the beginning of the tragedy that it poses for families throughout the country.
The disease is often difficult to diagnose. Its victims appear awkward rather than blind. They stumble in dim light. They bump into things that are on the edge of their field of vision. In most cases, 952 however, they can still read. They can still see perfectly well at the centre of the tunnel. Therefore, missed diagnosis of the disease is all too common.
I have a letter from a Mrs. Hoden, of East Herringthorpe, near Rotherham, that sets out a tragic example of the sort of misdiagnosis that may occur. Her two girls, who suffer from retinitis pigmentosa, were diagnosed as mentally backward, because of the effect of the disease on their ability at school. Their clumsiness at night was put down to the same thing. A boy who suffers from retinitis pigmentosa was classified as ineducable. These children should have been treated in a special school for impaired sight, not intellectual ability. They are now in that special school, but only after what amounted to years of delay because of misdiagnosis.
Even sadder is the fact that if retinitis pigmentosa is diagnosed, the victims all too often have to be told that in the present state of medical knowledge little treatment is available in this country. Therefore, when the disease is diagnosed, all they can do is to wait for the results of research that is going on in this country and overseas. They have to wait for the development of new methods of treatment to replace the old discredited methods of vitamin injection and placenta implantation—methods tried in the 1950s and 1960s—while going slowly, irrevocably and sadly blind.
It is hardly surprising that people are not prepared to wait. People faced with the negative despair produced by this disease and with the lack of opportunity for treatment in this country are naturally and inevitably prepared to clutch at any straw, any prospect of hope, that the disease can be not necessarily cured but checked, so that the progressive deterioration can be stopped. Therefore, they turn to hope emanating from overseas, specifically from Switzerland and the Soviet Union. They clutch at the hope offered by treatments there, because that offer of hope is not available in this country.
I have a letter from Professor Bangerter, the head of the Opos Eye Clinic in St. Gallen, Switzerland. His English is not of the best—like mine—but he says:The letters, we got from England, are so numerous that one of our secretaries is nearly completely engaged in answering them. The 953 balance of these letters is extremely oppressing.He is deluged with letters from people in this country who want help.
Inevitably, faced with the prospect of the steady loss of their sight, their friends, neighbours and acquaintances who do not want them to go blind are prepared to offer help. Therefore, appeals are made in different parts of the country, particularly in the North, to raise money to send these people to Switzerland, more commonly, but also to the Soviet Union, for treatment.
The figures for these appeals make instructive reading. I have heard of £22,000 being raised in an appeal in Liverpool for one family—the West Vale family fund. In Retford, £11,000 was raised for a girl called Shirley Dexter. In Sowerby Bridge, £6,000 was raised for Tracy Brown. In Keighley, £4,500 was raised for Garry Turton. In Grimsby, £2,000 was raised for Sid Owen. I read them in that order, but that league table of figures is not necessarily a league table of generosity in those places. If it were, Grimsby would certainly be at the head, not the bottom, of that league. Those are the kinds of appeals which have been launched and subscribed to all over the country. The list goes on.
The result is that people are being treated in Moscow, but more commonly in Switzerland. The numbers being treated in Switzerland must run into hundreds, possibly thousands, because of the period during which the Opos Eye Clinic has been carrying out treatment. I understand that last week, at St. Gallen, nearly a score of British people were being treated at the clinic. They included a family of 13 from Liverpool, seven of whom were being treated in the clinic for retinitis pigmentosa.
I hold no brief for either of these treatments. A British expert from Edinburgh University, Dr. Reading, attended a USSR national symposium last December. He came away unconvinced that the Russians had made any advances in treatment. Dr. Bangerter, the founder and head of the Opos Eye Clinic, is regarded, even in his country, as a fringe figure.
If I wanted to set myself up as a confidence trickster with the happy prospect of receiving large sums of money I could think of nothing better than to open an opulent clinic in Switzerland with large 954 numbers of patients so desperate for help and treatment that they would be prepared to fork out £700 a time for treatment and to come back every three months for further treatment and, once the initial treatment was over, to come back every year for further treatment to stop the deterioration of the disease. Such people would be prepared to pay out £10 for a box of vitamin pills, and even pay for sitting in the waiting rooms. I heard of a lad who went by himself because his money was in short supply, could not find his way round the town, and was charged for sitting in the waiting room of the clinic.
This situation naturally produces suspicions. Those suspicions are amplified because Dr. Bangerter has never published facts to show the success or failure rate of the treatment. People will continue to go to Switzerland and the Soviet Union to pursue any available treatment, so long as that treatment holds out a hope which is not available here.
When they return many such people claim that their sight has been improved. They do not say that they have been cured. Some newspapers have highlighted claims from people who say that they have been cured by this treatment, but no such claim has been made by the Russians or the Swiss. The most that I have seen claimed by the Swiss is that they can retard considerably the progress of the disease or stop it over a long period. There is no claim of a cure. The claim is of stopping the progress of the disease. People do return and say that their sight is improved.
One would need a national survey to discover total figures. I talked to Sid Owen, from Grimsby. He has not had the full treatment, but he says that he can now read better than he could before. I have spoken to Garry Turton, from Keighley, whose specialist has commented on the increased activity in his eye. I talked to the parents of Tracy Brown, of Sowerby Bridge. They say that her condition has been improved by treatment at St. Gallen. I have also spoken to two others.
I cannot evaluate these claims. All that I can do is to report that such claims are made. They could mean something or nothing. There are examples of spontaneous remission, and that could be 955 associated with the treatment. It could be anything. It could be hope, desperation, and confidence exuded by the Swiss clinic which makes people feel that they have been helped. It is also possible that having spent all the money which has been donated by others, patients will not admit that there has not been an improvement. Perhaps they claim an improvement to support those who have backed them.
The claims of improvement which are made by those who have been to Switzerland for treatment have not been professionally evaluated. The reason for that is that in son-le cases the patients have broken with their specialists, who did not wish them to go to Switzerland. In other cases the doctor or specialist did not wish to know about the treatment. There is no collective evaluation to give us a picture of the incidence of the disease being checked. There has been no attempt to follow up the hundreds of people who have received treatment, and continue to do so, to find out whether there has been an improvement or deterioration in their conditions.
We have not studied the Swiss treatment on the spot. The Medical Research Council's working party on retinitis pigmentosa did not do this. So far as I know, none of the specialists who dismiss the Swiss treatment has been to Switzerland to look at the treatment, although the clinic would welcome an inspection team. I quote from a letter in Professor Bangerter's classic form of English. He said:Personally I do not have any greater desire than to finally find doctors who are ready to join us in the tight against retinitis pigmentosa. So it is quite self-evident that the English team will get any insight and complete orientation"—this is a typically Swiss note—free of charge".So these people are prepared to open up their facilities for inspection by a team from this country. We welcome that kind of inspection, but it has not so far been forthcoming.
In answering my questions on the subject, the Minister of State has dismissed the Swiss treatment as though it were just a matter of the implantation of placenta of a type done here in the 1950s and 1960s. However, as I understand it, there is in the Swiss clinic a combination 956 of treatments which include injections to expand the vessels in the eye, the contraction of which is associated with the disease, the implantation of amnion from chicken eggs, vitamin and other treatments to check the loss of nucleic protein and, finally, play optics or exercises to expand the field of vision, the contraction of which is a dominant factor of this disease.
If the treatment is to be evaluated at all, it must be evaluated as a collective group of treatments, each element of which might or might not make a contribution, but all of which must be taken together because it is in that way that the patients experience them. Evaluation of this treatment must be carried out, for no one who is afflicted with the disease will be prepared to heed the warnings of doctors and specialists against going to Switzerland for treatment, because no one trusts the judgment of the doctors, and will not, unless it is reinforced by a specific study of the treatment and its results.
One needs positive evidence in order to give positive advice to people who are afflicted by this disease. Whether that advice is pro or contra, it must be based on evidence.
I dwell on the Swiss and Russian treatments because of the numbers of people who are trying to take them up. The numbers who are seeking treatment in Switzerland and the Soviet Union show the scale and desperation of the search by those concerned for some form of treatment—the scale of demand for something to be done to help those who suffer. Clearly, no words in this House will deter those high hopes, but words in this House can add to the demand for an expansion of research into the causes and treatment. They will lead to a demand for a greater concentration of resources on this matter, particularly of money, which here, as in so many other fields, is the key to progress with the diagnosis and treatment of the disease, and the key to success.
More prosaically, we can ask, as I have tonight, for an evaluation of the Swiss and the Russian treatments and of their effect on the people who have taken them. Preferably there should be a before-and-after evaluation, so that we can say with certainty, with authority and 957 with evidence, either that these treatments are no use and that people should not go, or that there may be something to them and, if there is, that they should be developed in this country.
If we do not study the treatments and assess them in this fashion, we are letting down the victims of retinitis pigmentosa—people who are bound, whatever we in this House say, and whatever experts tell them, to rage against the dying of the light.
§ 9.39 p.m.
§ Mr. J. W. Rooker (Birmingham, Perry Barr)
I am grateful to my hon. Friend the Member for Grimsby (Mr. Mitchell) for allowing me a few minutes in this short Adjournment debate. Contrary to what my hon. Friend said when he started his speech, this is probably one of the best attended Adjournment debates that has taken place for a few weeks. In any event, it is very useful to have a short debate on the visually handicapped, because it is a subject and a group of people that we do not discuss enough in this House in terms of the treatments that are available, on which my hon. Friend concentrated, and the help that the State can give to people who suffer from a visual handicap.
I want to draw the attention of the House to only a couple of points, but they are extremely important, the more so because the proceedings in Standing Committee on the Finance Bill—which we are not allowed to discuss in detail—took an unexpected turn on 24th May. My hon. Friend the Minister will he aware that the Financial Secretary to the Treasury made a commitment to the Committee on 24th May that on the Report stage of the Finance Bill the Government would be bringing forward a concession in the Bill concerning the visually handicapped. He is reported at column 493 of the Committee proceedings as saying that he hoped to bring something back on Report.
The term "visually handicapped" covers all those who suffer from a visual handicap, whether they suffer from the disease upon which my hon. Friend the Member for Grimsby has been concentrating this evening or from total blindness. Tonight the Minister ought to tell us what the Government are doing in regard to this particular disease. It is 958 outrageous that in 1978, when we have a Welfare State that is advanced as that of any other nation, various groups of people and neighbours of people who suffer from various diseases have to club together and sub around to send people abroad for treatment that ought to be carried out in British hospitals. The Government have recently forked out expenditure to send two Ministers and two civil servants to watch a football match in Argentina—thousands of pounds of taxpayers' money which could easily have been spent on half a dozen operations of the sort to which my hon. Friend has drawn attention. That is an absolute disgrace.
It is not demeaning the subject, of course, to point out that the people who were playing those football games must themselves be suffering in some small way from a visual handicap.
My hon. Friend the Minister ought to address himself to the central issue—the issue that is central in addition to that of the treatment of these diseases. That is the matter of what the State is doing for these people in 1978. For example, why do the visually handicapped not receive mobility allowance? Perhaps the Minister will tell us how many of the visually handicapped in Britain receive mobility allowance. That is a much fairer system than giving them a tax relief or a tax benefit, which, by definition, benefits only the best-off and only those who pay income tax. It does not benefit the visually handicapped person who cannot seek or gain employment and who, therefore, does not pay income tax anyway.
The money that is already spent by the Government on tax relief could be spent on mobility allowance and could be used by individuals. If the Government will not put the treatment of this disease on the NHS, where it ought to be, at least individuals would have the right to spend their mobility allowance or to save it up so that they did not have to rely on neighbours to pay for flights abroad and operation fees in Swiss or Russian clinics, or wherever they have to seek the treatment.
At the minimum, we ought to make sure that these people can afford to get the treatment needed if it is not provided under the NHS. That is not an argument for private treatment. It is an argument 959 for extending the NHS so that everyone in Britain who suffers because of poor health, an impairment or a disability can get treatment free at the point of use on the NHS. If the NHS is not up to that, it is up to the Government to see that individuals have the means to obtain the treatment so that they do not have to grub around among neighbours. The Minister ought to tell us the Government's view on this matter.
The other point to which I draw attention is the other benefits that the State gives to the visually handicapped and those who suffer from retinitis pigmentosa. I should be interested to know whether the sufferers from this disease are entitled to get even the minimum that the State gives to others—that is, car parking under the orange badge scheme. I am not sure whether the Department, in its sometimes callous treatment of the handicapped—though that is certainly not true of the Minister—has included these people within that scheme.
I ask the Minister also to mention abuses of the scheme. If the visually handicapped are to benefit from the scheme—if that is what my hon. Friend is to announce—how will he ensure that those driving them do not abuse the use of the orange badge when using vehicles on their own account? This is important. The question of the visually handicapped covers a multitude of problems, since some of the diseases are incurable, and it behoves the State to make the best possible allowances and conditions for those who so unfortunately suffer from them.
On the other hand, the State has the responsibility to put money into research and treatment so that people do not have to fly around the world seeking treatment which they should be able to get on the National Health Service. I hope that my hon. Friend will make known the Government's plans on this issue as well as dealing with the narrow but important points that my hon. Friend the Member for Grimsby has raised in this very important debate.
§ 9.47 p.m.
§ Mr. Harry Gourlay (Kirkcaldy)
I congratulate my hon. Friend the Member for Grimsby (Mr. Mitchell) on securing this debate on a subject that is of great importance to many thousands of people. 960 I support his demand that more money should be given for research into this tragic disease. A number of my constituents suffer from it—one in particular has been writing to me for several years in sheer desperation because of the publicity given to some of the so-called successes of operations and treatment in other parts of the world, particularly Moscow.
I understand that this constituent has spent hundreds of pounds of his own money trying to secure private treatment from various sources in this country which claim to have produced some results in trying to stop the progression of the disease, but unfortunately in his case it has been of no avail. In sheer desperation he wrote to me not long ago asking whether the Government could find a way to finance a visit by him to Moscow in order to secure treatment there.
This request arose out of the hope, engendered by Press reports, about individuals going to Switzerland and Moscow and returning with some indications that a certain improvement had been made. I hope that the Minister and the Department, in addition to coming forward with more money for research into the problem, will also give more publicity to the true position of the treatment being given in Moscow and Switzerland, and its results, so that persons suffering from this sight problem in Britain will not feel that they have been prevented only by lack of Government funds from having their sight restored.
This is a very important point. When there is Press publicity about one or two individuals who have had the backing of private or collective funds for this treatment, those who have not been so fortunate in getting such assistance feel that they are being denied something. The replies that Ministers have given me about this disease have clearly indicated that the results of the experimentation so far undertaken in Moscow and elsewhere do not give the kind of results in general that one is led to believe. Therefore, if we can get more publicity from the Government about what is happening elsewhere, those individuals will feel that the Government are doing as much as they can about the disease.
My hon. Friend the Member for Glasgow, Maryhill (Mr. Craigen), in a Question in May 1976, asked why research 961 into the causes of blindness, including retinitis pigmentosa, has been halted at Edinburgh University. The reply from the then Secretary of State for Education was:I assume my hon. Friend is referring to the research programme at the Medical Research Council's Brain Metabolism Unit, Department of Pharmacology in Edinburgh.He said:The unit's programme does not include research into causes of blindness generally but did include work into retinitis pigmentosa. The Council informed me that this work was discontinued only after careful consideration and because of other more pressing claims on their resources.There had been research in progress in 1976 which had been halted because of other priorities. Therefore, as a result of the debate tonight I hope that the priority can be restored and that more research will be undertaken into the problem as soon as possible.
While we seek more money for people suffering from this disease, the Government have given unprecedented assistance in the last four years, particularly to the blind section of our population. In terms of cash benefits and service, blind people have not gone unrewarded.
My hon. Friend the Member for Birmingham, Perry Barr (Mr. Rooker) referred to the orange badge scheme, which has been of considerable assistance to blind people. The hundreds of millions of pounds spent by the Government on blind people are only one indication that the Government take seriously the problem of the blind and of all disabled people, particularly since we were the first Government to appoint a Minister with responsibility for the disabled. We can rightly claim that we have gone far out of our way in order to look after people with all forms of disablement.
I congratulate the Royal National Institution for the Blind on its voluntary work on behalf of blind people in Scotland and other parts of Britain.
I appeal to the Minister to do what he can to see what further funds can be found for research into this tragic disease, so that in the future fewer people will have to fly to foreign lands to secure treatment.
§ 9.54 p.m.
§ Mr. Robert Hughes (Aberdeen, North)
I am grateful to my hon. Friend the 962 Member for Grimsby (Mr. Mitchell) for raising this important topic. Those involved with such diseases have been concerned over many years to try to find a cure. I hope that my hon. Friend the Minister in replying will give us some idea of the incidence of the disease and whether it is increasing or decreasing.
We are glad that progress has been made in reducing the number of people who suffer from diseases of the eye. Fewer young people are being born blind. Fewer people are becoming blind over the years. Many of those who become blind in later years do so as a result of either industrial accidents or road accidents. The number of people suffering blindness as a result of illness is decreasing. This causes some problems in relation to sheltered workshops for the blind, because they are increasingly becoming sheltered workshops for the blind and physically incapacitated. Of course, this is a problem which, in a sense, we welcome.
§ Mr. Rooker
My hon. Friend is correct, but I understand that of the 25,000 registered blind persons in this country only 10,000 are in employment. There is enormous scope for the rest of the visually handicapped to seek gainful employment in sheltered workshops or outside industry.
§ Mr. Hughes
I shall not digress too far into the problems of sheltered workshops except to say that, when the economy is in difficulty and there are problems for industry generally, sheltered workshops face the great difficulty of having to compete with outside industry for orders. In addition, there have been great advances in industry in relation to work for the blind and many people who would otherwise have gone into sheltered workshops are finding employment in industry. This is particularly important for blind women who, with the development of the braille typewriter, are able to take normal jobs as shorthand-typists. This is to be welcomed.
I return to what we can do about this disease. Among the suggestions in the paper by Dr. J. Marshall, of the Department of Visual Science, Institute of Ophthalmology, London, is that people who suffer from the disease should carry cards so that when they die, whether in an accident or otherwise, their eyes may 963 immediately be donated for examination There is a great lack of information about this disease. It is said that only 40 eyes have been examined since 1857 when the disease was first identified and only five eyes have been examined under an electron microscope.
The idea of carrying cards is useful, but it is not enough on its own. Our experience of the kidney donor cards leads us to believe that not enough people take the trouble to carry these cards. May I emphasise to people that they should carry a card saying that when they die their eyes may be donated for medical research and that, perhaps more important, their kidneys could be made available to someone who needs a transplant?
I hope that the Minister will continue his work on donor cards in respect of useful organs. Indeed, we could all say to our next of kin that when we die, whatever use some people may feel we have made of our bodies during our lifetime, the whole of our bodies should be donated to medical research.
Since the disease that we are discussing is hereditary, can steps be taken in the genetic counselling of sufferers so that we can try to prevent the disease from continuing? If we cannot cure it, perhaps we may be able to reduce the number of people who suffer from it.
I hope that my hon. Friend the Minister will be able to answer the various points that have been made in the debate, and I congratulate my hon. Friend the Member for Grimsby on raising this subject on the Adjournment.
§ Mr. Nicholas Fairbairn (Kinross and West Perthshire) rose—
§ The Under-Secretary of State for Health and Social Security (Mr. Alfred Morris) rose—
§ 9.59 p.m.
§ Mr. Morris
It is customary for Ministers replying to debates on the Adjournment to thank the hon. Members who initiate those debates. I want to make it clear at the outset that my gratitude to my hon. Friend the Member for Grimsby (Mr. Mitchell) for raising the subject of retinitis pigmentosa is more than formal. He takes a genuine and 964 abiding interest in the problems of handicapped people and has, for a considerable time, shown a deep and sympathetic concern both for sufferers from this distressing disease and for their families. His concern was well reflected in his speech tonight and I much appreciate this opportunity to examine and discuss the issues at stake.
§ It being Ten o'clock, the motion for the Adjournment of the House lapsed, without Question put.
§ Motion made, and Question proposed, That this House do now adjourn.—[Mr. Coleman.]
§ Mr. Morris
I am also glad that my hon. Friends the Members for Birmingham, Perry Barr (Mr. Rooker), Kirkcaldy (Mr. Gourlay) and Aberdeen, North (Mr. Hughes) have been able to intervene. They are all colleagues whom I respect for their concern for the blind and other disabled people.
§ Mr. Fairbairn
On a point of order, Mr. Deputy Speaker. I was anxious to intervene in the debate and I trust that I stood up before the Minister rose to reply. I hope that, as someone who did medicine, I shall not be prevented from speaking.
§ Mr. Deputy Speaker
It is the practice in Adjournment debates that hon. Members who wish to take part have the agreement of the hon. Member who has the Adjournment debate. I did not see the hon. and learned Gentleman in the Chamber during the debate. Therefore, I called the Minister to reply so that we could get on to the next Adjournment debate.
§ Mr. Morris rose—
§ Mr. Fairbairn
Further to the point of order, Mr. Deputy Speaker. The debate was not due to start until 10 o'clock.
§ Mr. Morris
My hon. Friend the Member for Grimsby asked about the size of the problem in this country. Although there are no reliable official figures, informed estimates suggest that there are between 10,000 and 25,000. My hon. Friend suggested that the locality in which people live may have some link with the 965 incidence of the disease. I am advised that there is insufficient evidence to reach firm conclusions about that, but the possibility cannot be ruled out that differences in incidence may be at least partly determined by genetic factors, and particularly by the degree of in-breeding. For example, on the island of Tristan da Cunha, where there is a high degree of inbreeding, the disease is extremely common.
Many of our sufferers from the disease are young people. Many have families who are naturally and rightly anxious to explore any path that might lead to improvement. That is the background to this important debate.
One of the major problems, which 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 which have different modes of inheritance and almost certainly represent different metabolic disorders. This 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 of how many separate diseases are embraced by the term retinitis pigmentosa, but there are probably well over 10.
The different forms vary greatly in terms of the time of life when the disease becomes apparent, the rate of its progress, and other disabilities with which it may be associated.
My hon. Friend referred to tunnel vision. As he said, this distressing condition, where the peripheral vision is greatly obscured or non-existent, is one of the symptoms of some of this group of diseases and is also a symptom of other diseases of the eye. Research is currently being conducted into visual field expanders to help combat this condition, and my Department will be monitoring this research with great interest.
As my hon. Friend is aware, the Medical Research Council set up a working party to look into research into all aspects of retinitis pigmentosa. My hon. Friend has been sent a copy of its report and will have seen that, among its conclusions, the working party highlighted two basic problems.
966 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".Again:The delineation of the clinical picture of the human disease is still poor".It is against the background of this present unsatisfactory state of knowledge that research into the disease and its treatment must be considered. In fact, the whole history of the study of retinitis pigmentosa is chequered with treatments which at first looked promising, only to drop quickly out of favour.
§ Mr. Fairbairn
The Minister used the term "pathological reactions of the retina". Will he tell me what he means by that?
§ Mr. Morris
I much regret that the hon. and learned Gentleman did not catch your eye, Mr. Deputy Speaker. His purpose now seems to be to delay the reply to this very important debate. The hon. and learned Gentleman joined us only very recently, Mr. Deputy Speaker, and you have given your advice. I am quite prepared to answer afterwards any questions of detail that may arise. I hope that the hon. and learned Gentleman, as a fellow parliamentarian, will agree that I must in decency give a full and considered reply to my hon. Friend, who has spent a great deal of time on this subject. He has clearly been quite genuinely concerned that there should be a full ministerial statement.
The hon. and learned Gentleman asked me what I meant by a certain phrase which is taken from a report of the working party. I told the House that a copy of the report was sent to my hon. Friend. I am quite prepared to make a copy of the report available to the hon. and learned Gentleman. He has my respect. I know of his work. He is an active member of this House. However, I hope that he will see the importance of a full and considered ministerial reply on a matter which is of very deep concern to many people in this country.
I was saying that it is against the background of the present unsatisfactory state of knowledge that research into the disease and its treatment must be considered. I said that in fact the whole history of the study of retinitis pigmentosa 967 is chequered with treatments which at first looked promising, only to drop quickly out of favour. This increases the distress of sufferers from the disease, and their families. Hopes for a successful treatment have often been raised and then dashed.
There has been a great deal of publicity, especially in the last few months, about two different forms of treatment for retinitis pigmentosa. One is carried out at the Opos Eye Clinic, in Switzerland, and the other at the Helmholtz Eye Diseases Research Institute, in Moscow. Many hon. Members have written to me about these treatments, often on behalf of constituents who are sufferers or relatives of sufferers. I am afraid that I have not been able to reply in encouraging terms, notwithstanding some news stories that patients have been treated abroad apparently with spectacular success.
What all of us must avoid is raising the hopes of sufferers without any proper basis for doing so. I am pleased that some patients have returned from treatment in Switzerland or Moscow with the feeling that their condition has improved, but for the benefit of all sufferers, including people who are considering trying to obtain these treatments abroad, we must have regard for the opinions of the great majority of ophthalmologists in this country.
Let me turn first to the treatment at the Opos Clinic, which I know my hon. Friend has examined most carefully. I understand that the treatment there consists primarily of implants of human placental and fetal tissue into the back of the eye. In fact, this form of treatment has been tried extensively throughout the world in years past and has been generally discarded. My advisers are not aware of its continued use anywhere now, except by ophthalmologists in Odessa, where the treatment started, and those in the Opos Clinic in Switzerland. I must emphasise that even in Switzerland no other ophthalmologists practise this treatment.
All my medical advice is that there is no prospect of this treatment being effective. When the treatment was considered by the Medical Research Council's working party, which I mentioned earlier, it made a comment which is highly relevant 968 and important to our debate this evening. Again I quote:Tissue therapy using placenta as a biological stimulant was widely practised for the ten years following 1955. There is no convincing evidence of improvement in vision following these treatments.My hon. Friend has suggested that my Department should undertake a survey of patients who have received treatment at the Opos Clinic. Yet I know he will appreciate that such a survey could be conducted only on a prospective basis to assess objectively any apparent improvement following treatment. Certainly, we would be most interested to know of any objective evidence of improvement of patients who have received treatment at the Opos Clinic. A research project would, however, be dependent both on the co-operation of the patients and the enthusiasm of the ophthalmologists looking after them in this country. This is, of course, something which my Department has no power to direct, but we would look at any research proposal most sympathetically. I hope that my hon. Friend will regard that as a constructive response to the suggestion that he has made.
§ Mr. Austin Mitchell
I am most grateful to my hon. Friend for his offer to look constructively at a research programme which might be submitted. I think that it is possible to devise a research programme which over a period will show whether or not there have been benefits from this treatment. The crucial part of the argument is whether these people have been helped. I thank my hon. Friend most sincerely for his offer.
§ Mr. Morris
I am grateful to my hon. Friend. Clearly, we must be in further touch with regard to the suggestion about research.
Let me stress at this stage that consultant ophthalmologists in this country can, of course, use the types of treatment practised at the Opos Clinic under the NHS if this, in their judgment, is clinically necessary. At present, the Medical Research Council is supporting two research projects into retinitis pigmentosa. The first of these concerns research into "Abnormal retinal physiology in retinitis pigmentosa" and the second involves genetic and clinical aspects of the disease. Both projects are funded for three years, 969 from September 1977 to August 1980. In addition, research is being conducted by the MRC clinical and population cytogenetics unit at Edinburgh, where basic laboratory type work is being conducted in a search for genetic markers for retinitis pigmentosa. This was identified by the MRC working party as a priority for research.
Turning to the treatment available at the Helmholtz Institute in Moscow to which my hon. Friend the Member for Kirkcaldy referred, let me first of all pay tribute to the working together that has resulted from eye diseases being one of the specific matters covered by the United Kingdom-USSR agreement on co-operation in medicine and public health. In consequence of the agreement, experts in this country have been able to learn more about the form of treatment used at the Helmholtz Institute. However, although we have a fair idea about the general basis of the treatment, which I am advised consists mainly of injections of yeast ribonucleic acid and entails several repeat visits, the exact details about the composition of the injections used and their method of preparation are not available. Nor do we have details about precisely which types of patients are being treated.
The Russians do not, in fact, claim that the Helmholtz treatment cures the disorders for which it is being used but only that it arrests their development for a period of time and in a proportion of patients. For this reason alone, it is imperative that patients should not be encouraged to exaggerate the possible results. As I said before, none of us must raise the hopes of sufferers if we feel fairly certain that their hopes will be dashed.
A group of consultant ophthalmologists in this country who have considered all the facts so far available have stated that the scientific evidence is as yet incomplete. In their opinion, until further information becomes available patients cannot reasonably be advised to travel to Russia for this treatment. Moreover, I understand that this opinion reflects ophthalmological opinion generally in this country.
It is for this reason that my Depart. ment has been unable to help in the way that several hon. Members have sug- 970 gested to me in their letters—namely, by use of the power under the United Kingdom-USSR agreement to assist with the funding of patients who wish to receive treatment in Moscow. There is no similar power for Switzerland.
As my hon. Friend the Member for Grimsby will appreciate, I am extremely sorry not to be able to paint a brighter picture. But it is in the best interests of sufferers and their families that we should not raise hopes that cannot be realised. I know only too well how their hopes are raised by reports of successful treatments for this distressing disease in other countries. But I know, too, how this often leads to even greater distress when their hopes are thwarted.
If I may quote just once more from the Medical Research Council's working party's report:There is no satisfactory evidence to suggest that any of the attempts to modify the disease process has been successful and there is little, if any, scientific justification for the various treatments which have been used … At the present time there is insufficient scientific basis for any of the treatments currently in use to warrant any support by the Council of clinical trials".It is an unpalatable fact, but one which must be faced, that no specific treatment has as yet been generally accepted by ophthalmologists as effective in preventing, correcting or curing retinitis pigmentosa.
For the future, I hope that my hon. Friend the Member for Grimsby and those others who have spoken in the debate and through them patients and their relatives, will at least feel assured on two matters: first, that we give high priority to research through the Medical Research Council for effective treatment of the condition, and, secondly, that my Department will continue to monitor progress on any course of therapy, either at home or abroad, which shows promise of improving treatment techniques.
I turn now to the practical help that can be given to the blind and the partially sighted, including people who suffer from retinitis pigmentosa. I refer specifically to low vision aids. I am very conscious of the difference that these aids can make to the life and activities of partially sighted people, even to the point of enabling them to have a job which would not otherwise be possible. A wide range of aids is available on long-term 971 free loan when prescribed by a consultant ophthalmologist. Nevertheless, we are concerned about the patchiness of the low vision aid service from one region to another.
My right hon. Friend the Secretary of State made this point when he addressed the Royal National Institute for the Blind last year. He said that it was quite unfair that the quality of life for a partially sighted person should be determined by the part of the country in which he or she lived. In order to try to overcome this problem, my officials are in the process of consulting relevant bodies, including the RNIB and the Partially Sighted Society, as a first stage towards discussions with health authorities. They will be looking for ways of ensuring that there is at least one centre in each region where low vision aids can be supplied.
The House will appreciate that even one such centre for each region may in some cases mean substantial extra expenditure, and it would not be reasonable to expect the instant supply of low vision aids to be made immediately in every area. We are, however, anxious to resolve the problems and achieve a more even distribution of the service throughout the country.
At this stage I should like to pay a warm tribute to the RNIB and the Partially Sighted Society on behalf of the House as a whole. There is little party animus on this subject as we share a deep concern for disabled people. I hope that the work of the RNIB and the Partially Sighted Society will go from strength to strength.
As the House knows, the social services departments of local authorities offer several important services to people who become blind. They can provide help with learning to cope without sight in the home. They can give instruction in mobility techniques such as the use of a long cane, and instruction in braille where appropriate. Some authorities arrange for newly blind people to attend a residential rehabilitation course run by the RNIB.
In addition, blind people are eligible, as are other disabled people, for the services provided under the Chronically 972 Sick and Disabled Persons Act and the Chronically Sick and Disabled Persons (Scotland) Act. Such services include help with aids and adaptations, such as the provision of a telephone or recreational facilities such as talking books. The disablement resettlement service of the employment service division of the Manpower Services Commission provides specialised help on employment.
§ Mr. Gourlay
Has the Department drawn the attention of local authorities to the specific provision in respect of people suffering from this disease? This is a disease suffered by many people, but it appears that because they comprise only a small proportion of the total population the seriousness of the disease is allowed to be glossed over. Therefore, if the Department has not yet done so, will it draw attention to this class of individual?
§ Mr. Morris
I assure my hon. Friend that I shall give sympathetic consideration to his suggestion. I tend to refer not so much to particular disabilities or diagnostic groups but to the needs of disabled people as a whole. There are people with this disease who are handicapped within the meaning of the Chronically Sick and Disabled Persons Act. Hon. Members on both sides of the House would carry out a great service to handicapped people if they were to speak in their constituencies about the priority of the claims of local disabled people.
As I was saying, the disablement resettlement service of the employment service division of the Manpower Services Commission provides specialist help on employment. Blind persons' resettlement officers and blind persons' training officers, who can be contacted through jobcentres and employment offices, cover industrial employment. The RNIB's placing officers advise on opportunities in the commercial, administrative and professional fields and also assist visually handicapped school leavers. In this way a comprehensive service is provided.
In regard to financial help, there are real advantages in the Government's developing policy on cash benefits for disabled people. The disadvantages of blind people have long been recognised in the special provisions for them in both social security and the personal social services.
973 In a real sense the blind paved the way for other disabled people for whom there was little, if any, recognition whatever. In recent years, however, there has been a development of services and cash benefits to help large numbers of severely disabled people with their problems. Blind people qualify in the same way for new help if their needs meet the criteria.
I wish to take this opportunity to reaffirm our commitment to exempt the registered blind and partially sighted from optical charges. Although the preparations are taking a long time, it remains our intention to see that this new exemption is introduced as soon as the way is clear.
My hon. Friend the Member for Perry Barr asked how many blind people receive mobility allowance. I cannot give him a precise figure tonight, but I wish to emphasise that many blind people receive the allowance. It is not, however, an allowance that can be paid for blindness alone. We are deeply aware of the pressure to do more than we have done so far. I have said on many occasions that I work in an area of activity in which there are infinite claims but only finite resources.
My hon. Friend also referred to the orange badge scheme. I am glad to have 974 legislated for that scheme in 1970. It is a source of pleasure to me also that the scheme now confers benefits on blind people. The blind, of course, cannot drive, but they can be driven by other people. Therefore, the orange badge scheme is very important to them. It is not possible for me now to deal with the matter which was mentioned about discussions in Standing Committee. I have no doubt, however, that the point will be carefully noted by my colleagues.
My hon. Friend the Member for Kirkcaldy asked for more research. Research is proceeding, and I hope he will agree that I have made a positive response to the suggestions which he and my hon. Friend the Member for Perry Barr made. My hon. Friend the Member for Kirkcaldy takes a close interest in these matters. All that he said tonight will be carefully and sympathetically considered in—
§ The Question having been proposed at Ten o'clock and the debate having continued for half an hour, Mr. DEPUTY SPEAKER adjourned the House without Quesion put, pursuant to the Standing Order.
§ Adjourned at half-past Ten o'clock.