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Dr. Julian Lewis: Is one of the sub-groups that is being considered that of the relatives of children and young people who have already died? It is inconceivable that that sub-group would not benefit from a screening programme. How many representations have been received from families wanting to know, as opposed to those from families not wanting to know about the dangers to their children?
Miss Johnson: We have already heard some anecdotal evidence about families' wishes, which I agree cuts in a different direction from the one in which the screening committee has gone.
Perhaps I can go on to say what the normal process should be for those who know that they are more likely to be at risk. The Bill asks us to standardise the screening process for all relatives of people who have fallen victim to sudden cardiac death. That could cause problems in overriding the clinical judgment of individual doctors and would be very difficult to enforce, and the House should consider carefully whether we should do that. We must support and value the autonomy and experience of family doctors, respect their skills and judgment and give due regard to their knowledge of individual patients and their ability to act accordingly. GPs should have the right to make decisions with patients and their families, and not have decisions imposed on them, as the hon. Member for Westbury (Dr. Murrison) said. We share, as GPs do, the desire for a proper follow-up of families at risk, but we believe that it must be done sensitively, with a judgment about the human realities of each individual case.
In response to the hon. Member for New Forest, East (Dr. Lewis), let me say that doctors should investigate all the close relatives, and especially siblings, of those who have suffered sudden cardiac death. That would
usually include referral for a cardiologist's opinion. The practice is based on the genetic linkage of hypertrophic cardiomyopathy and some cardiac rhythm disturbances that may be implicated in sudden death.In addition, there needs to be good evidence that early intervention can improve the prognosis—we must be able not only to identify individuals at risk but to offer them some help when we have done so. There must be the ability to evaluate the risk of death and start treatment straight away in the knowledge that it will make a difference. A review of the evidence showed, however, that there was no way of predicting the outcome from the disease on the basis of examining the heart through ECG and echocardiography testing. The most commonly used case definition—left ventricular hypertrophy on the basis of echocardiography—misses some people at risk and identifies significant numbers of people whose lifespan is likely to be no different from that of the general population.
Sadly, there is little evidence about the treatment of cardiomyopathy. Studies have shown that there is currently little evidence that starting treatment before the onset of symptoms makes a difference to the course of the disease. It is unlikely that any benefit would be gained from screening in those cases.
On raising awareness among GPs, current medical training already covers signs and symptoms of heart conditions and heart function problems such as the symptoms that are common to many illnesses. There is no new element of training that could increase a doctor's understanding of these symptoms. It is important to recognise, however, that the work of CRY and its members—
Miss Johnson: I am sorry, but if I am to finish, I will have to continue.
I was saying that no element of training could increase doctors' understanding of the symptoms, but their awareness and readiness to look for them is important. Hon. Members have referred to the youth of some of the individuals concerned, so the point about whether clinicians respond as they should is a good one. The work of CRY and its members has played a significant part in that matter and we need to reflect on what should happen in the future.
It is already recommended practice that, following identification of a cardiovascular disorder, GPs should consider with first-degree relatives what action might be appropriate. However, many cases of sudden adult death are symptomless and no warning signs are present for doctors to observe. Clinical experience suggests that early treatment may decrease the risk of sudden death where there is a genetic component and a strong family history of the condition. CRY itself recommends cardiac investigations where people have symptoms or where there is a family history of sudden death. I should also point out that deciding on the best way of dealing with sudden cardiac death is complicated by the fact that it is not classified as a syndrome in its own right. That is because there are many possible causes—neurological, metabolic, cardiac problems or underlying infections.
The increased investment that we have made will lead to great improvements in some respects. I mentioned earlier the 89 new or replacement catheterisation
laboratories and there are improvements in electrophysiology, 24-hour heart rate monitoring and echocardiograms. Those services are particularly relevant to those at risk of sudden cardiac death, as better monitoring may lead to a better early diagnosis. We are also supporting CRY with a section 64 grant for its project to provide bereavement counselling.On surgical treatment for certain conditions, the National Institute for Clinical Excellence is reviewing its guidance on the use of implantable cardioverter defibrillators. An ICD is a device that can be implanted within the chest wall. It monitors the heart rhythm, senses whether there may a severe disturbance in that rhythm and, if necessary, delivers an electrical impulse to stop the abnormal rhythm and allow the normal one to resume. Current guidance already suggests that ICDs should be used for patients with an inherited cardiac condition with a high risk of sudden death.
I am very grateful to my hon. Friend the Member for Stockton, South for drawing attention to a condition that, although relatively rare, is tragic in its impact on those it affects. The Bill presents the Government with a genuine dilemma. Although we fully understand the intention behind it and share the House's sympathy for the individual tragedies that we heard about today, for the reasons that I have sketched out in my response, I am reluctantly unable to support the Bill as it stands today.
The clear motive underpinning the Bill is just. It draws attention to a real problem and concerns the lives of many young people and their families. I am not therefore prepared to leave matters as they stand now. I will shortly establish an expert group, chaired by the national clinical director for heart disease, to explore thoroughly what further steps are available to us. The group will act as an advisory board on cardiac arrhythmia and sudden cardiac death, and will inform future policy development in those areas. In response to the interest of Welsh colleagues, we would be happy to include representatives from Wales in the membership of the group.
The group will be composed of external stakeholders, similar to the external reference groups that helped to create the national service framework for coronary heart disease initially. Voluntary and professional organisations, including CRY, the Ashley Jolly SAD Trust, Hearty Voices, the British Cardiac Society and the British Pacing and Electrophysiology Group, will all be invited to join.
The terms of reference of the group will include writing a communication strategy to raise awareness in primary care of the signs and symptoms of conditions leading to sudden cardiac death. It could also make recommendations about how deaths are certified in these tragic cases, which relates to the implications of the Bill for the Home Office. It is likely that the group will conclude that an additional NSF chapter is needed to cover the issues, and we would aim to publish that within a year.
We have looked carefully at the arguments presented. My hon. Friend the Member for Stockton, South, and the other hon. Members who have contributed, are rightly passionate about the cause. I am pleased that the Bill, and this debate, will lead to the formation of the advisory group. Through that group, the Bill will make
a real difference in raising awareness of the conditions leading to sudden cardiac death, and has the potential to save lives and prevent families from going through the tragic experiences that we have heard about today. I hope that the actions that I have mentioned, which will be taken forward speedily via the routes that I have outlined will enable us to make progress on the intentions that my hon. Friend outlined so ably, including increasing awareness and our efficacy in identifying and responding to these tragic conditions. I hope that she will find it possible to withdraw her Bill and meet me to discuss the membership of the group and how we can make urgent progress.1.52 pm
Ms Dari Taylor: With the leave of the House, I appreciate this opportunity to respond to the debate. Everyone who heard it will agree that all the contributions have been excellent, thoughtful and supportive. I am most grateful to all those hon. Members who have contributed.
The last part of the contribution from my hon. Friend the Minister gave me some hope that all the issues that we have brought to the House today have a clear chance of being aired in detail and in full. Those issues are not easy; they are complex and have dimensions that I could not introduce to the House today. I am not a medic, but I have a clear commitment to reducing the number of people who die from conditions that can be diagnosed and treated. My commitment was to having the issue aired and preventing more deaths, and I thought that the best way to achieve that was through screening.
My hon. Friend the Minister has offered the House the proposal that an advisory group on cardiac arrhythmia and sudden cardiac death should be established. If appropriate, such a group would write a chapter for the national service framework for coronary heart disease. That is an incredibly positive offer. I recently wrote an article on the national service
framework and received glowing responses about the NSF from primary care trusts—first about the fact that there is such a national service and, secondly, because it offers a framework of understanding and can deliver services to control various illnesses and support the people who suffer from them.I was also pleased to hear my hon. Friend say that CRY, the charity that has done such sterling work with regard to sudden death in the young, will be included in the group. That is incredibly valuable. Indeed, the articulation of the whole debate and my hon. Friend's suggestions for the way forward are profoundly valuable.
I appreciate this chance to respond to the many contributions. I am sorry that there is not enough time for me to answer in detail the important questions put by the hon. Member for Twickenham (Dr. Cable), but I promise that I shall address them and respond at another time. My thanks to the hon. Gentleman, to the hon. Members for Cheltenham (Mr. Jones), for New Forest, East (Dr. Lewis) and for Brentwood and Ongar (Mr. Pickles) and to my hon. Friends the Members for Sheffield, Heeley (Ms Munn) and for North Durham (Mr. Jones), who sponsored the Bill and gave me the confidence to put it before the House. I also thank my hon. Friends the Members for Gower (Mr. Caton), for Ogmore (Huw Irranca-Davies), for Inverness, East, Nairn and Lochaber (Mr. Stewart) and for Telford (David Wright) and the hon. Member for Westbury (Dr. Murrison) who spoke for the Conservative Opposition.
I apologise to the House for gabbling, but I am trying to speak quickly. I am most grateful for all the speeches and interventions that were made. I shall read Hansard with considerable care, so that I can feel even more competent to respond on the issue, should I need to do so at another time.
I conclude on that positive note. This has been a long debate. Members have been particularly indulgent to me, and I am most grateful, but I now beg to ask leave to withdraw the motion.
Motion and Bill, by leave, withdrawn.
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