Disability: Prevention

HL Deb 14 May 1986 vol 474 cc1142-50

3.3 p.m.

Lord Henderson of Brompton rose to call attention to the importance of preventing disability in the United Kingdom and in developing countries; and to move for Papers.

The noble Lord said: My Lords, I rise to move my Motion on the importance of preventing disability in this country and in developing countries. I see from the list of speakers that 12 noble Lords have put down their names to speak on this Motion on preventing disability and another 11 noble Lords—I do not call them a second XI—have decided to speak on the Second Reading of the Bill concerning those who are already disabled. I think that is an index of the interest and concern of this House from noble Lords, in all parties and in none, about the problems of the disabled.

I can illustrate the extent of disability in the world by referring to the United Nations estimate in 1983 that 450 million people in the world are severely disabled; and that is mostly in the developing countries. It is about one-tenth of the world's population, or eight times the entire population of the United Kingdom. I suppose that since 1963 the world population has increased to some 5 billion, so the estimate for those who are severely disabled would now be more like 500 million.

In this country alone the proportion of the population that is severely disabled is about one in 20, or 2.5 million, and more like one in 10, or 5 million, if lesser disabilities are taken into account. Much of this disability is avoidable and I hope the House will agree that two-and-a-half hours of its time is well spent on discussing means of avoiding disability by prevention or control of prevalent disabling conditions; at home through existing health programmes and in developing countries through the United Nations and its agencies. Your Lordships will see that by the use of the word "avoidance" I have included measures both of prevention and of control.

Let me now briefly say a few words about the origin and growth of a remarkable but far too little known organisation called IMPACT. Soon after the International Year of Disabled People in 1980, Sir John Wilson—who is himself blind but one of the world's visionaries—suggested that a team of those most interested in the prevention of disability, which was one of the ideas of the IYDP but not much pursued during that year, should be drawn together to meet and to prepare a plan of action, which it did at Leeds Castle. This had the backing of the DHSS, I am glad to say, and had the immense advantage of having the noble Lord, Lord Home of the Hirsel, as its chairman. Incidentally, the noble Lord would be here today but for a prior engagement in Edinburgh.

It is from that conference at Leeds Castle that the IMPACT programme was developed. This was presented to the General Assembly of the United Nations by Sir John, with Foreign Office backing. I am glad to emphasise for a second time that this has had government backing. It was then adopted by the United Nations as part of its decade of action concerning disabled people. Now, in 1986, we are halfway through that decade and already much has been achieved by three agencies of the United Nations: its development programme, UNICEF and the World Health Organisation, as well as other programmes on water and food shortage.

The IMPACT programme was launched in India in 1983, in Africa in 1984, in the Asian and Pacific region in 1985; and this year there will be a launching in Latin America. So there has been rapid action in the hope that, if this is continued, avoidable disability world-wide may be substantially diminished, if not eliminated, by the end of the 20th century. Success will depend not only on skill and determination but on political awareness, administrative competence and the creation of reliable and cheap delivery systems.

I give some examples of the successful programmes in developing countries achieved through simple systems of delivery at low unit cost: first, vaccines. The size of the problem is indicated by the fact that 3.5 million children are disabled each year by polio, TB, measles and neo-natal tetanus. It costs about £3 a child—an incredibly low figure—for full immunisation if it is done on a massive scale and if it is done with full local co-operation, as was done recently in Madras. So we hope that the Madras example will be followed world-wide.

Secondly, there is malnutrition. I do not think that it is at all widely known that famine disables many more people than it kills. I hope that famine relief agencies will build into their programmes specific cost-effective delivery systems for disabilities, especially in children, consequential upon famine, and I hope that someone who has the ear of Bob Geldof is listening.

Examples of what can be done cheaply are: the delivery of vitamin A to children to save them from a disease which blinds 200,000 children a year; or iodine added to drinking water to prevent thyroid deficiency, which cripples 100,000 children a year through deafness and mental handicap. The cost per child is negligible.

Then there is blindness. I know that the noble Baroness, Lady Vickers, will be talking about blindness and so I shall say no more than that there are eye camps that have been established for cataract operations at a unit cost of £5 or a little more. Similarly with deafness, middle ear operations—believe it or not—have been done in camp conditions for about £10 per unit in India and Thailand. Likewise, there are walk camps in India and East Africa where grossly crippled grovelling people can be enabled to stand upright and walk with the use of quite simple, cheap calipers, crutches and artificial limbs which are made to an internationally tested standard by village carpenters.

This is all most encouraging and heartening. I have no time to give your Lordships more examples, but I ask the Government to consider helping the international programme in the following ways. First, I hope that the FCO will encourage British representatives at meetings of the United Nations Development Programme, WHO, and UNICEF to speak in support of IMPACT programmes, and—for goodness sake, why not?—to give credit to this country for what is essentially a British initiative. Secondly, I hope that the ODA will earmark some of its funds specifically for disability programmes in the developing world, and will also allocate a small sum to the United Kingdom IMPACT foundation to cover the overseas travel and expenses of those who, for the most part, give their services free.

I turn to the topic of avoidable disability in the United Kingdom. The February seminar this year organised by IMPACT concluded that at least 20 per cent. of the disability in the United Kingdom was preventable or remediable through existing health programmes—I emphasise through existing health programmes, because that is by far the cheapest and most effective method of proceeding. However, it requires a full and firm commitment across departments of the Government to a coherent, national and regional strategy and also the same kind of commitment on the part of health authorities, local authorities, the medical and rehabilitation services and, not least, the voluntary organisations of and for disabled people.

Very briefly, the programme should include screening, the provision of reliable data, the elimination of excessive waiting time in hospitals, health education, medical training, participation of disabled people through their organisations, and of course research. In passing I may say that the February seminar supported the recommendations of the Warnock Committee on research into genetic disorders. There is also the need for genetic counselling for young parents and continuing research into congenital infections (those congenital infections which in fact are the biggest cause of multiple disability), environmental pollution, especially by lead, the prevention of accidents in the home, the street and the place of work, and so on. The list is endless and I have no time to go into details. I hope that those speakers who will follow me in this debate will do so.

I should like to make one exception and recall the debate on speech therapy in this House last summer. In a courageous speech, the noble Lord, Lord Smith, described his own aphasia, as a result of a stroke, and how the help of the Chest, Heart and Stroke Association had enabled him to recover his power of speech. Aphasia, which is a severe disablement and is common after a stroke, is often not treated at all and the victims are regarded as though they were mentally afflicted. So in this one small sphere much improved rehabilitation for stroke victims, involving neurologists and rehabilitation experts, is called for.

Arising out of the February seminar of IMPACT I should like to ask the Government to give encouragement and guidance to all the relevant authorities and organisations in undertaking cost-effective action in the vitally important role of preventing disability, and in addition to undertake a screening programme to detect potentially disabling conditions in time for effective prophylaxis. I know that sometimes these screening programmes have been tried and phased out—your Lordships will remember the mobile chest X-rays, for example—but there are other conditions which do demand screening.

Secondly, I ask the Government to provide an information programme. The statistics are wildly out of date. It is a long time since the Amelia Harris survey. It would be well worth while investing a modest sum to discover the causes, extent and distribution of disability in the United Kingdom, which in itself would lead to better allocation of resources and better formulation of priorities. I believe that there should also be ad hoc special studies based on random sampling.

I have referred already to the need to cut down waiting time in hospitals, especially for surgery. Better systems of referral from one region to another without administrative impediment or penalty for the region which accepts the case are surely necessary. There is far too much unnecessary waiting for relief for people who are blind or deaf in some regions where there is a full waiting list, while others have spare capacity. I should like to see the National Health Education Council have as a specific objective the avoidance of disability. I do not believe that it does so now. As regards research, in addition to fundamental research I should like to see operational research into the application of existing knowledge.

Finally, in relation to these requests to the Government, I believe that there really should be an expert analysis of the economic and financial benefits to the nation of fuller measures to prevent avoidable disability compared with the cost of allowing it to continue.

I have had in this speech various recurring themes of cost-effectiveness, research into getting priorities right and the need for effective delivery systems in time to detect incipient disability and in order to seek out those most in need of such detection or relief. The lower you are in the social heap, through ignorance, poverty, or despair, the less able you are to help yourself. This applies both at home and in developing countries.

In this debate I hope that something will be done towards alerting the general public and the Government to the need for a new drive in preventive medicine at home and in the developing world. Both public pressure and political will are necessary. My Lords, I beg to move for Papers.

3.20 p.m.

Lord Campbell of Croy

My Lords, I should like to be the first to congratulate the noble Lord, Lord Henderson of Brompton, on having chosen this subject and on the way in which he has introduced it in a speech which most fluently covered a whole range of the most important points. I agree with him that we spend a great deal of our time concentrating on those in our community who are already severely disabled. It is as important that we should give our attention to another aspect of disablement and take every opportunity that we can to prevent disability from occurring.

In this short debate I shall concentrate on two subjects, both within the United Kingdom rather than in the rest of the world. The first concerns ante-natal precautions and the second immunisation. Because of advances in medicine and technology with scanners and other equipment it is now possible to know a great deal about the unborn child. Even in the early stages of pregnancy serious deformities, brain damage or mongolism can be detected. Screening in earlier pregnancy is encouraged by the Government, the health authorities and certainly by the medical profession.

I should like to ask my noble friend Lady Hooper, who is to reply, how widespread is the availability of screening with the modern techniques and equipment. It is no good encouraging women in early pregnancy to go for such screening if there is only limited availability or if a long distance has to be travelled in order to reach the appointment.

Where there is a serious deformity and that deformity or another defect is found, difficult decisions have to be taken. One option is abortion. That is a controversial subject and raises issues of principle and religion; I certainly understand and respect that. But I hope we can all agree that it is important that as much information as possible should be discovered at the early stages, if it can be, and that decisions can then be taken before birth, with advice from the medical profession and a picture being given so far as it can be of what the child's future is likely to be if it is born alive.

Those decisions are difficult. I can speak only for myself, and if as a prospective parent I was told that a very deformed or brain-damaged child was likely to be born, I should opt for abortion at an early stage rather than knowingly bring into the world a seriously deformed child. But I make it clear that I say that for myself only.

I reiterate that nowadays a family should have as much information as possible beforehand rather than experience the shock and distress of the sudden discovery after birth of a severe malformation. Nature reacts and responds automatically in many cases. It is estimated that about 65 per cent. of potential mongols are naturally rejected by miscarriage.

I must emphasise that many of the children born with serious handicaps are lovingly looked after and accepted by their families. In other cases that is not possible. I know of families where there have been severe strain, an overwhelmingly burdensome daily life and the break up of the marriage in certain cases. Perhaps in those cases the children should be institutionalised. I am glad to say that there are places in the country where such handicapped children can be well cared for and looked after. My point, which I cannot overemphasise, is that if we can reduce the number of such disabled people born into the world, more resources will be available for those who need the care.

That brings me to the research side. A great deal is being done with research into crippling diseases and conditions, but I believe that more could be done. I should like my noble friend today, if she can, to tell us more about what the Government are doing or encouraging others to do. There are many calls on private contributions for various good causes—and medical ones of different kinds—but research into cures for crippling illnesses should be a high priority.

Even at Question Time today we were discussing the matter of vaccines, and I now come to my second subject—immunisation. Vaccines or other forms of innoculation early in life have in the past 50 years gradually eliminated some of the most lethal and crippling diseases. Perhaps the most notable one is polio, but there are now vaccines for measles, whooping cough and other serious diseases that can leave disability. There must be proper arrangements for the rare cases where the vaccine has caused serious damage to someone who is vaccinated. We cannot pursue that now because, as we were reminded at Question Time, there is still a case before the courts. Clearly there should be proper arrangements. It is exactly what those arrangements are to be that needs eventually to be decided with the help of the courts.

When I was Secretary of State for Scotland in the early 1970s and therefore responsible for health as well as many other matters, I launched a campaign concerning rubella (German measles). It is a mild illness, but if a woman has it during pregnancy, it raises grave risks of a child being born with severe defects. I am glad to say that that has been carried on, and I think that it is now pretty widely known that, as a precaution, girls should have that vaccination in early life.

When I was Chairman for Scotland of the International Year of Disabled People in 1981 we gave special attention to prevention as well as the other aspects of disablement. Our particular Scottish project was an immunisation programme for children in the Sudan. We raised many thousands of pounds for that. It has proved to be timely, given the developments in that part of the world more recently.

There are other aspects of the subject; for example, prevention of accidents, health education and early remedial treatment before a temporary condition becomes permanent. I also should like to mention the case of the noble Lord, Lord Smith, who made his first public speech, after having had a stroke and being unable to speak at all, in the debate a year ago that I initiated on vocal disabilities. I am glad to say that he has been able to continue speaking since then. That is a remarkable case of someone overcoming a disability which in many similar cases has been permanent.

Prevention is an important part of the subject of disablement. I commend to the Government what the noble Lord, Lord Henderson, said and I hope that they will give the highest priority to the prevention of disability.

3.30 p.m.

The Earl of Longford

My Lords, I join the noble Lord, Lord Campbell of Croy, who speaks with a great deal of authority on these matters, in congratulating the noble Lord, Lord Henderson, on the initiative and the originality which he has displayed in introducing this Motion. Since he became a Peer, the noble Lord has had so many compliments heaped on him that he may become a bit bored. I shall not break the sequence altogether. He has performed the extraordinary feat (unique in my time) of moving from the world of officialdom to that of a Life Peer. The only thought that occurs to me now is how boring it must have been for him during all those years to have been helping us to make speeches which were not as good as the ones he could have made himself. I thought he spoke effectively today, as always.

I know that the noble Lord and others will forgive me if I concentrate on muscular dystrophy or more particularly Duchenne muscular dystrophy. I suppose that I should mention my special reason for taking a more than ususal interest in that aspect of disability, although I have often spoken, as so many others have, on matters affecting the disabled.

Barbara, an old friend of mine, had a brother who when a small child developed muscular dystrophy. His muscles gradually faded away and he died when he was 16. By that time, my friend had had four children—two boys and two girls. She then discovered that she was a carrier of that fatal disease. It was also then discovered that although the affliction had mercifully passed by her two sons, both her daughters were carriers. One of the daughters is my godchild and another is my wife's godchild. I can therefore speak with a certain personal interest.

I have called the disease fatal, and so it is at present and will be for the foreseeable future. I do not for a moment rule out possibilities to which we cannot look forward just now. At the moment the disease is incurable. It is a muscle-wasting disease which takes three or four years to manifest itself, by which time the mother may have produced more than one child with the same affliction. There is no cure at present and no cure in sight. I hope that one will be found in years to come.

By the age of 10 or 11, the boy is usually in a wheelchair. He becomes progressively weaker until his muscles are so wasted that they can no longer perform their function—for example, breathing—and he dies. That used to happen at about the age of 15—I mentioned that my friend's brother died at the age of 16—but physiotherapy and a good diet can extend that to the early twenties but not beyond at the moment.

The mother with a defective X-chromosome, speaking generally, has a 50 per cent. chance of passing the disease to her daughters or her sons. A daughter who acquires the affliction may be what is called a low risk or a high risk carrier. I shall not go into that point at the moment. The daughter becomes a carrier and the son becomes a victim.

How do I relate that to the subject of this Motion—the prevention of disability? It is clear that if a person containing that defective X-chromosome chooses not to reproduce himself or herself, that is one way of preventing the disability being passed on. For that to happen, it is necessary for the first person to know that his or her body is defective in that way. In the case of men, although the vast majority suffering from the disease die young, the disease is all too obvious. In the case of women, it is not by any means obvious. It has only recently been possible to acquire the knowledge necessary to decide with reasonable confidence who is or who is not a carrier.

Last summer, I took the liberty of approaching every Member of this House—I am afraid that it was an impertinence—on behalf of the Westminster branch of the Muscular Dystrophy movement. I take the opportunity now of expressing my heart-felt thanks to the several hundred Peers who so generously responded. The genetic research towards which your Lordships' money went is devoted to finding as many ways as possible of knowing with certainty that a woman is or is not the carrier of a defective chromosome. I take leave to quote a slightly technical passage from Dr. Paul Walker, executive director of the Muscular Dystrophy Group of Great Britain and Northern Ireland. He said: In the last four or five years the techniques of molecular biology have made it possible to investigate the whole genetic make-up of the X-chromosome. Our scientists … have discovered that there are 'deletions', that is, small pieces of the chromosome which are missing, in about eight or nine per cent. of the boys with Duchenne muscular dystrophy. In those cases it is now possible, with about 98 per cent. accuracy, to tell the female relations who may be at risk whether they are carriers or not". That applies to a relatively small number of those concerned, but Dr. Walker and his colleagues consider that that is an enormous break through. That is an addition to the much more rough and ready methods which have prevailed. As I explained earlier, my friend was diagnosed as a carrier a few years ago.

I shall quote one or two other sentences from Dr. Walker. He said: We should realise this is only an intermediate stage. The purpose of the research going on into genetic diseases is, first, to find out what the gene is, then what it does and then to find a way of treating the disease which will reverse the harmful effect of whatever it is that goes wrong". I am sure that Dr. Walker would not want me to exclude any possibilities for the future; but at the moment we are faced with the fact that unless one favours abortion, which I do not, the only way of preventing the disability being passed on is for those who are diagnosed as carriers to decide not to have children.

That is a decision which I should not dream of suggesting to anyone. I shall not say to those young women placed in that poignant position that I know best and that they should follow my advice. That would be gross impertinence. The decision must be their own. It must be their decision not to have children.

My family's two goddaughters have chosen not to have children. They are both fine, healthy, vigorous young women and that is their decision. I do not say that other people may not reach some other decision. If we say, looking at the matter nationally, that for this terrible disease to be prevented from going further we call for great, lifelong sacrifices from a number of young women, the least we can do is to make some small sacrifice ourselves by promoting the research that will make the disease less dangerous.