Neil O’Brien – 2023 Speech on Sudden Cardiac Death in Young People

The speech made by Neil O’Brien, the Parliamentary Under-Secretary of State for Health and Social Care, in the House of Commons on 1 February 2023.

I am grateful to my hon. Friend the Member for Scunthorpe (Holly Mumby-Croft) for securing this debate on such an important issue. I am extremely sorry to hear about Nathan and about Stephen and Gill and, indeed, about the constituents of the hon. Member for Merthyr Tydfil and Rhymney (Gerald Jones). I would very much welcome the meeting that my hon. Friend described with her constituents, and we will set that up.

We recognise, though it is hard to understand, the devastation caused to families by the sudden cardiac death of a young person. Sudden cardiac death is an unexpected and sudden death that is thought to be caused by a heart condition.

The implementation of genomic laboratory hubs across England provides an opportunity to explore the systematic introduction of post-mortem genetic testing for SCD. Seven NHS genomic medicine service alliances play an important role in the support of genomic medicine. Those NHS GMS alliances are supporting several transformation projects, including a national project with the NHS inherited cardiac conditions services, the British Heart Foundation and the country’s coroners.

The project will test the DNA of people who died suddenly and unexpectedly at a young age from a cardiac arrest, and their surviving family can also be offered genetic testing to see if they carry the same gene changes. In addition, a pilot project based in the NHS South East Genomic Medicine Service Alliance is aimed at people who have had an unexpected cardiac arrest and survived. They will be offered a genomic test to enable access to treatment, and further genomic testing will be offered to identify immediate family members at risk if a gene change associated with a heart condition is found.

As my hon. Friend the Member for Scunthorpe mentioned, screening programmes in England are set up on the advice of the UK National Screening Committee. These are not political decisions; they are decisions based on the best currently available evidence, and they determine whether the introduction of a screening programme would offer more good than harm. As my hon. Friend said, in 2019 the National Screening Committee reviewed the evidence to provide general screening, and concluded at that time that there was not enough evidence to support the introduction of a national screening programme.

Research showed that the current tests were not accurate enough to use in young people without symptoms, because incorrect test results can cause harm by giving false reassurance to individuals with the condition who may have been missed by the screening test, while individuals without the condition may receive a false positive test result that could lead to unnecessary treatments. The review found that most studies for SCD were in professional athletes, whose hearts of course have different characteristics from those of the general population. Tests can work in different ways in different groups of people. That is why it is very important that research is gathered in a general population setting, as to base it on athletes would not provide a good indication of what would happen if we tested all young people under the age of 39.

The UK NSC was due to review SCD in 2022-23, as my hon. Friend mentioned, but has been unable to do so for a variety of reasons to do with covid and competing priorities. I am unable to confirm this evening when the regular review of SCD will take place, but I am assured that it will take place as soon as constraints allow. I will write to my hon. Friend setting out more details very shortly, because I know how urgent it is to understand when that will happen.

In 2022, the NSC’s remit was expanded to set up a research sub-group to keep abreast of ongoing research related to screening, and to identify research requirements and advice on mechanisms to address them. The committee has encouraged stakeholders to submit any peer-reviewed evidence it may have on incidence for review by the NSC via its early update process, but so far it has not received anything. My hon. Friend asked a series of detailed questions and made a series of very helpful suggestions about how we change the process. The NSC will doubtless have heard the issues that she has raised in this House, but I also undertake to raise directly with the NSC all her very constructive points.

The consensus at present has been to focus on rapid identification of sudden cardiac death and automated external defibrillator use in people who suffer a cardiac arrest, in line with the NHS long-term plan. The Government continue to encourage communities and organisations across England to consider purchasing a defibrillator as part of their first aid equipment, particularly in densely populated areas. My hon. Friend the Member for Brigg and Goole (Andrew Percy) mentioned some of the excellent work that has been done in his local area on this front. At the end of last summer, the Government announced that all state-funded schools across England will receive at least one AED on site, with more devices delivered to bigger schools, boosting their numbers in communities across the country. In December, we also announced the community defibrillator fund, which gives communities matched funding and aims to install about 1,000 more defibrillators across the country. I know that many hon. Members in this House will want to take up that offer and are spearheading work to get more AEDs out into the community.

To conclude the debate and start the process that we will be going through, I again thank my hon. Friend the Member for Scunthorpe for raising this hugely important issue. We have heard some truly heartrending stories this evening, and I thank all those involved in The Beat Goes On and other similar organisations for their hugely important work. I promise that this issue will continue to get our utmost attention as a Government.