Below is the text of the speech made by Austin Mitchell, the then Labour MP for Grimsby, in the House of Commons on 13 June 1978.
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, 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 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 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 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 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 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.