Below is the text of the speech made by Phillip Whitehead, the then Labour MP for Derby North, in the House of Commons on 5 May 1978.
In raising this subject, I do not want to be thought to be plugging a particular brand name or suggesting that Naudicelle is a catch-all cure for the scourge of multiple sclerosis. However, I believe that it is of fundamental importance that we and the Department of Health and Social Security give the closest attention to the dietary supplement containing a committee on borderline substances and derived from the evening primrose, which is sold in this country under the name of Naudicelle, as I shall refer to it. We should look at reasons why an increasing number of multiple sclerosis sufferers are, in a sense, conducting their own trial and marking their own personal results by the money they have to spend on the preparation as well as the testimony they almost all give to it.
I was first interested in the properties of Naudicelle by my constituent and friend, Mrs. Josephine de la Mare, secretary of the Derby Multiple Sclerosis Society. I regret to say that after a long illness, which was fought every inch of the way, she died last week. It is right that I should pay my own tribute today to this brave lady. She led me, in early discussions about dietary supplements, both to Mr. Joe Osborne of Newhall in Staffordshire, who has been working in the Burton-on-Trent area, linking Naudicelle dietary supplements with a proper regime of exercise, and to ARMS, the action group for research into multiple sclerosis.
Mr. Osborne, through his own Member of Parliament, the hon. Member for Burton (Mr. Lawrence)—who has taken up his case energetically and who, I know, would have wished to be present today had he not been prevented by a prior engagement—and the ARMS group, in direct correspondence with the Department of Health and Social Security and the Medical Research Council, have been pressing for early publication of the results of recent trials at Newcastle, for further and wider trials of this substance and for support for the screening of close relatives of multiple sclerosis sufferers who may, it seems possible, be at greater risk, so that there shall be an early diagnosis of the disease.
I shall argue that such wider study of a substance with no known harmful side effects and for which much is claimed, would be helped by the availability of Naudicelle on prescription at the discretion of the local general practitioner. Professor Field at Newcastle, who has been a pioneer of research into demyelinating diseases and in the screening of young people who may be at risk, is strongly of the opinion that Naudicelle can be of help to acute sufferers from multiple sclerosis in reducing the number, severity and duration of the attacks which they incur.
There have been earlier experiments by Professor Millar and others into the effects of linoleic acids which principally derive from sunflower seed oils as a dietary supplement. The test which is most eagerly awaited now is the double-blind trial carried out by Professor Shaw, also at Newcastle upon Tyne. This, I understand, covers two groups of patients, the old chronic and acute relapsing patients respectively. Professor Shaw wrote to the hon. Member for Burton on 13th February to say:
“Our clinical trial has been completed but the results have not yet been fully analysed. Much of the statistical work has been done but there are still a few more calculations to be made before final conclusions can be drawn …. As you may recall, the results of the first part of the trial which were published in the British Medical Journal in October showed that Naudicelle had conferred no benefit on the treated patients. The part of the trial now under analysis deals with a different group of patients but I hope that no assumptions will be made about the outcome of the trial until the calculations have been completed. I am distressed to learn that in Italy Naudicelle has received wide publicity as an effective treatment for multiple sclerosis. This has raised hopes to a degree that is not in my view justified by the scientific information at present available.”
I include that last rider because it is important to stress very strongly that no one seriously asking for a wider study of the substance ought to claim, or ought to lead multiple sclerosis suffers to believe, that it is a cure for the disease. That is not what is claimed by those who have taken the greatest interest in it and, indeed, by the patients who claim, as I shall show, that it has many beneficial effects for them. It can, it is claimed, control the onset and severity of the attacks incurred by multiple sclerosis sufferers.
The earlier the disease is diagnosed and caught, the greater the beneficial effects have been, it is claimed, in nonscientific trials. That is why we are all anxious to see the early publication of the second series of tests on acute relapsing patients being conducted by Professor Shaw. I spoke earlier this week to Professor Shaw. He told me that he will be calling together in London a group of his learned colleagues in the next few days to evaluate the results that he has achieved in the second test, prior to publication.
In the nature of balloting for debates on the Adjournment, Mr. Deputy Speaker, it is not always possible to predict precisely when the debate will come. In a sense, it might have been better had we been able to have this debate a week or two after the publication of Professor Shaw’s finding. However, what I shall be saying today will be argued ex hypothesi on the basis that if we learn something from the second series of tests conducted by Professor Shaw, that will be an additional reason and, I submit, an urgent reason for the Department’s taking a fresh look at the claims which have been made so widely for this substance Naudicelle.
Hon. Members who have communicated with the Department of Health and Social Security—as I know many of them have—have had to rely upon the testimony of those already using the substance, and the many doctors and others who have been working in this field, such as Mr. Osborne, to whom I referred earlier, who have used it often in conjunction with concentrated programmes of exercise and physiotherapy.
I think that in this short debate it would be right to quote from at least some of the testimony which is typical of that which so many hon. Members have received from individual sufferers from multiple sclerosis. I shall mention one or two of the letters as an example of the pressure which has rightly been brought to bear upon Members of Parliament to make the DHSS look again very carefully at this matter.
I have a number of letters here from which I shall quote very briefly. First, I have a letter from Mrs. Williams of Burton-on-Trent, who has had the disease for a long time and whose husband has worked closely with Mr. Osborne in that area. She says:
“In the space of 12 months—from 10th May 1977 to the present day, 4th May 1978—there has been no need for me to visit my GP from either attacks due to MS or, indeed, any other ailment. In fact, I have not lost one working day from my employment … Of course, there have been those days when I felt a little below par, but I think one would agree all normal people experience those. Looking back over these 12 months on Naudicelle, I will now stress more strongly where the greatest stability has been created. Firstly, there has been a tremendous improvement in my vision … and a marked improvement in my circulation.”
Mrs. Williams then goes on to describe other beneficial effects of the treatment. She has had the disease for a longer period of time, and her letter is typical of many that we get expressing the general view that this substance is very beneficial indeed as a dietary supplement.
The next letter is from a constituent of mine, Mrs. Mason, in Allestree, in Derby, who is talking of her husband. With this case, as with the previous one, I am following up a case which has been mentioned in the book published on the subject by Mr. Osborne. Clearly one wanted to look at such cases some months or a year later, to see whether this had been a false dawn in the case of the sufferers concerned. In each case that I have followed up it would appear that the improvement—or what they believe to be an improvement—has been sustained.
Mrs. Mason, in talking of her husband, writes:
“His wheelchair is now a thing of the past, now walking with either one elbow crutch or one walking stick, in the home on a very smooth surface he needs no aid at all, his arms are much stronger, his eyesight is better than it has been for years.”
She goes on to say that the doctor is very pleased by this improvement. To the amazement of the local Press, her husband entered the sports for the disabled recently and was able to win the discus competition, the shot put and the 60 metres freestyle walk. He will go on to compete at Stoke Mandeville in September.
Mrs. Mason says in the course of her letter that she thinks that the capsules should be available to multiple sclerosis patients on the National Health Service. She adds:
“It is cruel to deprive them of it. They are like insulin is to a diabetic, and where would they be without their insulin, and yet that is free for diabetics.”
I appreciate that there are very great differences between the need to provide insulin for diabetic sufferers and what is claimed and what is so far known of the gamma-linolenic concentrates. However, I feel that when people speak in those terms, although they may be using a figure of speech, they are expressing, in what is to them the clearest possible way, the amazing effect that the treatment has had on them and on their own lives. They are lives which, I remind my hon. Friend, have been largely without hope because one of the cruellest features of the disease multiple sclerosis is that when it is initially diagnosed all too often in the past people have been told “I am sorry. There is no effective treatment.
We can ease the downward progression of the disease, perhaps. We can make you comfortable for long periods of time. You will enjoy periods of remission. But the overall prognosis is pretty hopeless.” That is what has caused so much despair and dismay amongst those who have had the disease diagnosed and why it is so important that we should look at every possible way of helping them.
I have a number of other letters which it is perhaps unnecessary to quote at length because they all make the same basic point that their condition has stabilised and that some at least of the symptoms of this dreadful disease have been very much ameliorated over the course of months and years during which they have been taking this preparation as a dietary supplement.
This is no scientific trial. I accept that. It could not possibly be. But it is of importance that we have the widest possible knowledge of these case histories, and I want to ask my hon. Friend to say how many submissions there have been from general practitioners about Naudicelle and about the beneficial effects of linoleic and gamma-linolenic concentrates of this kind, whether based on the evening primrose, sunflower or safflower oils.
We need to know what the medical profession, directly in touch as GPs are with the average MS sufferer, is now saying about this, and I think that we also sould know whether there are any known harmful side effects to this preparation. I know of none, and I have been told of none. It is important that this should be established. If we argue, as I am in this debate, that it would be greatly in the interest of arriving at some kind of conclusion about the possible beneficial effects of Naudicelle if we were to have it more widely available so that there could be a test within the general population, we need to know whether it has harmful side effects. I believe and I submit that it has none.
The Department has said in letters to me, to the hon. Member for Burton and to a number of other hon. Members that Naudicelle is a food and not a medicine, that it will keep a benign eye on tests into the efficiency of dietary supplements, and that it has allowed Naudicelle a Medicines Act licence under the 1968 Act with all the usual limitations, but no more than that.
The problem is that for the many thousands of multiple sclerosis sufferers time is very precious and hope is rationed. Many of the letters that I have mentioned speak of the utter despair of those who have had multiple sclerosis diagnosed. This is why, in terms of those who have it at the moment and even more so in terms of those many thousands who will have it diagnosed in the next few years, it is important that we should now have from the Department a promise of early action.
With that in mind, the questions which I wish to ask are these. Will the Department undertake to act on the results of the Newcastle tests if these happen to show beneficial results for acute relapsing patients? Will it, in those circumstances, be prepared to go back to the advisory committee on bordering substances and to the MRC and to consider once more the possibility of putting Naudicelle on the National Health Service at the discretion of the general practitioner concerned? Will it further extend the field trials under its own auspices prior to such reconsideration? At the moment we know of the double-blind trial which is going on at Newcastle and we know of the immense random sampling, if it can be so described, which has come to the surface as a result of the work of laymen such as Mr. Osborne and many individual branches and arms of the Multiple Sclerosis Society. We should like to see the Department itself intervening and taking a hand.
Finally, I wish to go slightly wide of the subject of this debate and ask my hon. Friend whether the Department will undertake to extend and further investigate the system of diagnostic blood testing which has been developed by Professor Field. It is in this area that there is the most hope for combating those forces which appear to act early on the acute multiple sclerosis sufferer. If any of the claims for these dietary supplements have been justified, it is obviously in cases where the disease has not progressed through all its acute stages. In that stage most can be done by the dietary supplements.
The badge of the Multiple Sclerosis Society is a key. We are all looking for the key which will unlock the mysteries of this disease. The most curious thing about the disease itself is that perhaps that key might be found in the seeds of that equally mysterious flower, the evening primrose.