To ask His Majesty’s Government what assessment they have made of the UK National Screening Committee’s position on screening to detect issues that could cause sudden cardiac death in young people.
Every sudden cardiac death of a young person is a tragedy. The UK National Screening Committee—UK NSC—is currently re-examining the evidence for sudden cardiac death screening in young people and will open a public consultation on this in the spring. The Government welcome the UK NSC’s robust and rigorous approach to evaluating the benefits and harms of screening, as it is vital that screening policy is based on scientific evidence.
I thank the Minister for that Answer. This week, Cardiac Risk in the Young will publish a study reporting on the cardiac screening of 104,000 young people aged 14 to 35 over a 10-year period in England and Wales. Uniquely, it follows up on each one. Sadly, this is still under embargo, but the results are very exciting. When the Minister has read the study, will she commit to a meeting with the NSC, specialist cardiologists and CRY so that we can reduce the number of 12 seemingly fit young people who die from sudden cardiac arrest every week?
The noble Lord raises an important point. The need for evidence is paramount in this area. I cannot speak on behalf of the Minister, but I will make sure that she is aware of the noble Lord’s request and will respond.
My Lords, although great strides are being made in medicine, as I understand it, to study individuals’ genetics to predict a propensity to get diseases later in life, this raises a serious question about how the insurance market is going to respond to that. I would be very dubious about going in for one of these screening tests because inevitably health insurance would be refused for anything that showed up. It is a great advance in medicine to be able to predict what you might or might not get, but there is a serious issue with insurance companies. Is that on the Government’s agenda?
I am aware that this informs some people’s decisions not to go forward for the test. That is a real consideration. All aspects of genomics will be taken into account by the Government. The noble Lord raises an important point. We cannot force people to go for testing if they chose not to for whatever reason.
My Lords, international evidence already exists. The evidence that the committee is using is pre pandemic—2019—but since 2024 evidence shows that there is only a 3% false positive rate on these tests. Therefore, the Government and the committee already have the evidence. In the light of 12 young people a week dying because of not having this screening, will the Government introduce the precautionary principle and look at testing or some other measure until such time as the committee makes a recommendation in the summer on the evidence that exists?
I am not convinced that the evidence is as categoric as the noble Lord asserts, but I am delighted to tell the House that the UK National Screening Committee will open a public consultation on sudden cardiac death screening in the spring. It is crucial that we let it do its work and bring all the evidence forward to make sure that we come forward with the right approach to a desperate situation.
My Lords, does the Minister agree that the UK National Screening Committee is an excellent body doing a fine job of work? It is interesting that this is the third Question on screening we have had in the past two months of parliamentary work. What we see is that screening that is not focused is not only not valuable but risky because it causes a great deal of harm to perfectly healthy people. Will she point out that focused screening is what we need and that that requires considerable scientific endeavour? I think we are endeavouring to do that at the moment.
My noble friend raises the crucial point about the NSC. I emphasise again that it has a well-earned international reputation for rigour and for making robust, evidence-based recommendations that stand up to scrutiny. My noble friend is right that we have to understand that introducing population-level screening for some aspects can cause harm, and we have to be mindful of that, let the experts do their work and come up with the best way forward for the majority of people.
My Lords, many sudden cardiac arrests in the young happen when they are engaged in sport or physical activity. A study by the Journal of the American Medical Association shows that since the introduction of screening, Italy has seen a fall in the incidence of sudden cardiac death in sport by 89% to a level that is now below the general population. Today, the rate in Italy is just one in 1.5 million, compared with one in 100,000 in the rest of the world. What conversations have the Government had with their Italian counterparts to understand what is different about the Italian population and why they have decided to screen young people active in sport?
Comparisons of screening programmes with other health systems can be misleading. For example, the programme in Italy operates only in the area around Venice; it is not a national screening programme. The published data is unclear and we have requested further information. Of course, if any programme in the world is really cutting through, we want to know about it. We would love to know more, and we urge the Italians to respond to our request for more information.
I declare that my son is a cardiologist. Following on from the Minister’s comments about the risks associated with false positives, where 30% to 40% of those who had a false positive, even after having been proven not to have particular cardiac risk, have long-term health anxiety and sport avoidance, will the Minister ensure that the national screening committee is also able to consider the importance of defibrillators being available 24/7 on a national database that can be accessed by anyone, of those defibrillators being maintained, and of all young people—that is, those at school, students and those in employment—have training in CPR? There is evidence that immediate CPR when someone collapses with cardiac arrest can be a very effective way of managing it at a relatively low cost.
I have some experience in the rollout of defibrillators, which is delegated to local areas, and well-meaning groups fundraise and want them in a particular place. Managing and maintaining them properly is paramount, as is training people in how to use them. Understanding them and going through general training, which I think most local authority members have done, is critical. We have so many examples where immediate intervention saves lives. It is a big programme with a huge number of defibrillators—over 110,000 as we speak—but it is life-saving, so it needs to be taken seriously.
My Lords, as we are talking about the death of young people, I am sure my noble friend the Minister would like to take this opportunity for the House to express our thoughts and prayers for the families, friends and loved ones of those people who died in that appalling accident recently in Switzerland.