Muscular Dystrophy (Hansard, 10 February 1981)

§ Mr. Allen Adams (Paisley)

I beg to move, That leave be given to bring in a Bill to put a statutory obligation on health boards to set aside a proportion of their existing resources for research into the causes and effect of muscular dystrophy or to fund any research project approved by the Secretary of State into the causes and effect of muscular dystrophy.

The Bill is in no way a party political issue. I have drawn support for it from all political parties in the House, with the exception of the Liberal Party because I could not find any of its members.

As the title suggests, the Bill is exclusively about muscular dystrophy. It would perhaps be appropriate at the outset to ask ourselves two questions—what is muscular dystrophy, and what can we do about it?

I shall briefly explain in layman's terms what muscular dystrophy is. Unlike motor neuron disease, or multiple sclerosis, with which it is generally confused, it is essentially a disease of the muscle. It does not affect the nervous system. We must make that distinction. The muscle wastes away quickly. The disease is exclusively carried by females and is passed on exclusively to male children.

It is a cruel disease. It is not necessarily apparent at birth. I know of many children who seemed to be normal at birth and in whom the disease did not become manifest until they were 5, 6 or even 8 years old. However, although the disease is not apparent at birth, it can be detected at birth by a simple procedure, which is in use in Japan, Germany and to some extent France. It is not used in maternity units in this country. Perhaps our maternity units could consider that process. Detection at birth is vital.

The disease destroys half of a child's muscle by the age of 5. If the process is to be slowed down, detection at birth is vital. There is a medical wrangle over the suitability of one or two of the drugs, but certain drugs, if used from the age of 1 or 2 months until the child is 5, will undoubtedly slow down the process. However, by the time that the disease has manifested itself, generally at 5 or 6 years of age, it is too late even to slow its progress. I urge doctors to consider universal testing at birth.

I do not wish to exaggerate the size of the problem. The disease affects only one in 100,000 children. It does not occur more frequently in areas of deprivation, or in different parts of the world. It affects all strata of society and all parts of the globe equally.

If the disease is allowed to take its course, an affected child is in a wheelchair by the age of 8. As the muscles weaken and are destroyed, the child's body becomes progressively distorted. The child never leaves his 744 wheelchair. Death normally follows between the ages of 15 and 20 years. A few struggle on into their late twenties or early thirties.

Any one of us can suffer from cancer or be struck down by heart, liver or kidney disease. We do not know whether such diseases will kill us next week, next year, or in three years' time. Muscular dystrophy kills, with certainty. No one survives. That is its unique feature. Not only does it kill; it destroys a child's ability to enjoy childhood. He cannot use his legs or arms.

Society has done little to combat the disease. Dr. Thomson, of Knightswood hospital, in Glasgow, has had to work in a cupboard for the past 20 years. His annual grant is £22,000. Out of that he has to find his salary and that of his assistant, and the money to maintain his equipment. He has come upon a drug called Allopurinol. It is not claimed to be a miracle cure, but it appears to slow down muscular wastage and to maintain mobility for an extra two or three years. Such a horrible and cruel disease is worthy of the expenditure of more than £22,000 a year. We have perhaps seen the first chink of light, but more research needs to be done.

I have a list of people who claim that they get money for research into muscular dystrophy. The Southern general hospital in Glasgow gets £43,000; Edinburgh gets £40,000; and St. Andrew's gets £5,000. However, their research is not specifically into muscular dystrophy. A great deal of the money goes towards other research, albeit necessary research.

The Bill aims to give the Minister powers to tell health authorities—perhaps the wording is slightly wrong—to set aside a specific part of their budgets for research solely into muscular dystrophy. I repeat that it is one of the cruellest diseases that we know.

We all know what Ten-Minute Bills are for. Their purpose is essentially to draw attention to a specific subject. I hope that when the Bill has a Second Reading, Government Whips and the Front Bench will go to the toilet or to the pub—I hope that they will disappear—so that we can examine the problem in detail, as in Committee.