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Ms Dari Taylor: I am grateful that my hon. Friend has come to that point. I have asked this morning for equal treatment without ageism, so that all conditions are treated equally in the national health service and are recognised as such.
David Wright: My hon. Friend is right. I entered the House as a Labour Member because I believe in equality. One of the objectives of the Bill is to promote greater equality, and that is clearly something that my colleagues and I would want to do as Labour Members. Nevertheless, I know that there is a commitment across the House to ensuring that we promote equality in such issues, and we all want to encourage people of all ages to examine issues relating to their physical fitness and well-being and to construct lifestyle programmes that suit them.
Huw Irranca-Davies: Does my hon. Friend agree that, with regard to giving a strong voice to health issues that affect the young, one of the most effective mechanisms is for young people to engage, if we can persuade them to do so, in the democratic positions that are available on primary care trusts or on local health boards in Wales? The more representation that we have from people who are concerned with the youth agenda in health, the more pressure can be brought to bear.
David Wright: My hon. Friend is right. We need to encourage a wider showing of people from different age groups, genders and communities—of course, the black and minority ethnic community comes to mind—on PCT structures. There is under-representation among young people, and I hope that we will see more come forward.
I pay tribute to CRY, which has been mentioned a number of times. I did not know much about the organisation until my hon. Friend the Member for Stockton, South approached me with regard to the Bill. I have visited its website, and I have taken a look at the material that it produces. The website is one of the best that I have visited in recent times. It provides a raft of information about sudden death among the young and lists a range of sponsors. For example, I think that Sir Steve Redgrave and Ian Botham are listed as supporters of the organisation. I encourage people to take a look at the site and to start to understand some of the important issues a little more closely. I would like to see more young people engaged and involved with primary care trusts. Perhaps organisations such as CRY can promote and encourage young people to participate more effectively, and can be another tool that we can use to engage people more generally.
We also need to consider programmes to support people who are first responders when others find themselves in difficulties. An excellent first responders programme has been promoted by the Government, I think in partnership with St. John Ambulance and other organisations. We may need to raise awareness among such organisations of the fact that when people see a young person struggling or in trouble, sudden death may occur, so they need to be trained effectively to understand the symptoms that are involved and the processes that are needed to get the patient into care very quickly. Obviously, the people who have symptoms are the lucky ones in many cases, as they are the people who get to be screened and have their situation examined. The most unlucky ones are those who die very rapidly. Such deaths might be avoidable and preventable if an awareness that there was a history of such conditions in somebody's family meant that screening would take place.
In conclusion, I have great respect for my hon. Friend the Member for Stockton, South, who gave a detailed explanation—I confess, however, that it was difficult to follow—of the circumstances surrounding sudden cardiac death in young people. It was a fine speech, and I congratulate her on it. I wish the Bill all the best, and I hope that the Minister's response will allow it to make significant progress. Once again, I congratulate CRY on its work in this important area.
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Dr. Vincent Cable (Twickenham) (LD): I, too, congratulate the hon. Member for Stockton, South (Ms Taylor), and offer Liberal Democrat support for her Bill. I do so both as party spokesman and in a personal capacity, as I was flattered when she asked me to be a sponsor. We wish the Bill well.
The hon. Lady has done an enormous amount of research on the subject, and she introduced the Bill with a great deal of conviction, which everyone found compelling. Our debate has been characterised by the emotionally compelling cases made by the hon. Members for New Forest, East (Dr. Lewis), for Brentwood and Ongar (Mr. Pickles), and for North Durham (Mr. Jones). Perhaps the most compelling case was made by my hon. Friend the Member for Cheltenham (Mr. Jones), who spoke from his own experience, thus adding a great deal of weight to his analytical arguments and making the debate better and stronger.
The arguments in favour of the Bill can be summarised as a mixture of elementary humanity and good economics. Elementary humanity comes into play because we are talking about young people who die prematurely, often in tragic circumstances. The legacy for their family, parents, brothers and sisters is the deeply painful knowledge that their disease was both detectable and treatable. The fact that it was neither detected nor treated generates guilt and anger, which is a powerful humanitarian case for doing more and, as several Labour Members said, collectively making a difference. The good economics stem from the attractiveness of basic preventive medicine and screening. We should detect disease early and apply recognised therapies through drugs and surgical intervention, which are relatively low cost, as an alternative to the painful, prolonged and intensive
treatment described by my hon. Friend the Member for Cheltenham, which, as he said, is an enormously costly use of resources. Humanity and economics therefore come together in a way they rarely do.We should consider why it has fallen to the hon. Member for Stockton, South to tackle the issue in a private Member's Bill. It is clearly a good private Member's Bill, because it is modest and makes no claim on public resources—indeed, it may save the Chancellor a great deal of money—but why was it necessary to pursue the issue through that channel? The hon. Members for Ogmore (Huw Irranca-Davies), for Telford (David Wright), and for Gower (Mr. Caton) all addressed the defects of the current system, and I shall add two observations, one of which has not been made before. There is a general problem securing attention in the health service for difficult and obscure conditions that need specialist treatment. Every year, 200 to 400 individuals die of such conditions, but as has been said, that is a large number for the people who are affected. In the greater scheme of things, by comparison with deaths from cancers and the main heart diseases, the number is small, so those specialist conditions slip through the cracks. I am involved in all-party groups on pulmonary hypertension and on motor neurone disease, specialist conditions that have no connection with the illnesses we are discussing today but which share the problem of commanding insufficient attention to get a national service framework. Primary care trusts are overstretched, so it is difficult to get local attention as well. There is a general problem with getting the attention in the NHS that those deeply troubling but essentially minority conditions demand.
The hon. Member for Telford dealt admirably with the other underlying reason why we need such a Bill—the existing system is not working very well. The hon. Gentleman set out the reasons. Although there is screening, it is not proactive. There is no pressure on the pathologist conducting a post mortem or on the GP to do anything, so nothing necessarily happens. Something needs to be done through the modest provisions of the Bill to inject a greater sense of urgency and importance into the processes that are already occurring.
Huw Irranca-Davies: I thank the hon. Gentleman for giving way, and for his intelligent analysis of what is satisfactory and what is not. Would he join me in applauding the simplicity of the proposal that a pro forma should be attached to the post mortem report where the cause of death cannot be identified or the cause of death could be identified as a cardiac disease? The simplicity of attaching a pro forma to that diagnosis which the doctor could follow up is bliss indeed.
Dr. Cable: Yes, and I thank the hon. Gentleman for reinforcing the point. One of the criticisms frequently made of us in the House is that, often for the best of reasons, we generate additional regulation and red tape. The Bill clearly does not involve that. It calls for a simple, straightforward procedure to which nobody could possibly object. I expect the people involved would be grateful that a standardised approach would be required.
The Bill is desirably modest because there is a general consensus that indiscriminate screening would not be helpful. Reference was made to the Logan report. National screening that was imperfect and covered enormous numbers of people when only a small number are affected would generate a large number of what clinicians call false positives and false negatives, causing anxiety on the one hand, and on the other hand missing many cases. Nobody who has spoken in quite a long debate has advocated a mass screening programme. We are dealing with a specific and commendably simple approach.
I shall pose a few questions, which the hon. Member for Stockton, South or the Minister may be able to answer. Part of the purpose of the debate is to exercise critical scrutiny. We are all in favour of the Bill, but questions need to be asked. The first is how many people or what percentage of the people who are affected by the conditions—there are about seven conditions—are being picked up under the present system? Are we talking about 10 per cent. or 50 per cent.? I have no idea, and nobody has used numbers.
What percentage is the hon. Member for Stockton, South aiming for as a result of her provisions being introduced? I suspect that is not a question she can easily answer, but it would give us an indication of how much good we were doing through the Bill. In his intervention, the hon. Member for New Forest, East (Dr. Lewis) cited the case of Germany, where I think he said roughly four times the number of people were undergoing surgical procedures as a result of the screening techniques there. Is that the scale of the improvement that we can expect?
The second question is how many people would be cured as a result of being identified through screening. The hon. Member for Ogmore commented that knowledge in itself is desirable, and it may well be, but it would be much better if people were cured. I am not a clinician and I do not know the medical arguments, but it would be useful to know roughly what percentage we would expect to be cured if more people were identified through a better screening system. What would the ultimate human, medical and economic benefit therefore be? The other side of the question is how many people would still not be picked up. I read through the medical paper that was background material to the Bill and I did not understand a great deal of it, but I got the impression that, of the seven conditions, some were hereditary but some were not. How many people would still not be picked up, even as a result of a more sophisticated screening system?
Another question to which I should be interested to know the answer is this: will there be any attempt to collate the information to create a national database? This is a decentralised initiative that very much depends on the initiative of the pathologist and the GP. Is it possible to disseminate their knowledge? That matters in terms of adoption, for example. In my own family, one of my cousins was adopted at birth with the terrible condition of Huntington's disease because there was no mechanism for sharing information about risk. Is there any way of putting information about people who are identified through screening, but do not follow it up or pass it on to their families, on to a database so that it can be more widely used?
My final question, which was touched on briefly by the hon. Member for Ogmore, concerns insurance. Has the hon. Member for Stockton, South talked to the insurance industry about the implications of more effective screening? As more people will know that they are at risk of a fatal disease, does that mean that they will automatically be blackballed from life insurance or pay heavier premiums for it? Would that penalty disappear if they had been treated with drugs or through other interventions? The issue involves all kinds of difficult ethical and economic problems that have been addressed in larger fields such as cancer.
My questions are not intended to be destructive, but to find out a little more about the background. I, like other Liberal Democrat Members, strongly support the Bill and hope that it will complete its passage. We wish the hon. Lady well and hope that through these proceedings we will have made a small difference to the lives of our constituents.
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