Sudden Cardiac Death: Young People
(1 year, 9 months ago)
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Holly Mumby-Croft (Scunthorpe) (Con)
I am very grateful to have the opportunity to speak on a genuinely important issue. What I am about to speak about was brought to my attention by my constituents, Stephen and Gill Ayling, who are in the Public Gallery today. They experienced the very worst thing that could ever happen to a parent when, sadly, their son Nathan died at the age of 31 in February 2019. While I was not fortunate enough to have known Nathan, we were close in age and we both went to the same local school.
Nathan lost his life to young sudden cardiac death after a problem with his heart went undetected all his life. Before his death, Nathan appeared fit and healthy. He played football and rugby regularly, and lifted weights and cycled. Stephen and Gill have previously described how they will never, ever be able to escape from the memory of when they found their son, who had died in his bed. As a parent myself, I cannot begin to grasp how utterly shattering that moment must have been. My condolences go out to them and to their family, and to all who knew and loved Nathan.
In the wake of Nathan’s death, Stephen and Gill became involved with the charity Cardiac Risk in the Young, which provides heart screenings—I will come on to this later—for young people. Stephen and Gill founded a community group, The Beat Goes On, which is a wonderful name and a wonderful tribute to Nathan. As part of the group, Stephen and Gill raised £10,000 to fund private screenings on 10 and 11 January this year, providing tests for 186 young people in our community. Ten of those young people have been referred for further cardiac investigation. I commend them for all their hard work and put on the record my thanks, and the thanks of many in our area, for all they have done for our community in Scunthorpe.
Last summer, I tabled a written question to ask the then Secretary of State for Health and Social Care what steps his Department was taking to increase the diagnosis rate of cardiac conditions in people aged 14 to 35. Once those conditions are diagnosed, it is often possible for them to be treated, either with pharmaceutical or surgical intervention or through lifestyle changes.
In the Government’s response, I was informed:
“Since July 2021, we have launched community diagnostic centres (CDCs) to increase diagnostic activity and reduce patient waiting times. CDCs offer checks, scans and tests in community and other health care settings and delivered over 880,000 diagnostic tests…This will support Primary Care Networks to increase the detection of conditions such as heart valve disease.”
While that answer is good news for some people, I would welcome any assessment the Government have carried out of how helpful those diagnostic centres are in relation to heart conditions in young people specifically.
I was also told:
“The diagnosis of cardiac conditions is based on the presentation of symptoms, rather than the age range of the patient”
or their genetic risk factors. That is a crucial point, and for young people it takes us to the crux of the problem. Research has shown that in 80% of cases of young sudden cardiac death, there were no prior symptoms of a heart defect; no opportunity was presented to step in and intervene and potentially save a young person’s life. As a result, families have lost sons, daughters, brothers and sisters—someone they loved.
Doctors have raised with me their concerns about a completely symptom-focused approach to young people. Aside from the fact that the overwhelming majority of people who have this condition do not exhibit symptoms, my understanding is that the symptoms that GPs are trained to look for are breathlessness, heart palpitations, dizziness, chest pain and losing consciousness. Those are common symptoms that can be attributed to other ailments, many of which will be more common in young people. As such, GPs could potentially misdiagnose a heart condition, perhaps providing medication—for anxiety or depression, for instance—that could aggravate an undiagnosed condition.
The best approach to take in healthcare is always a preventive one—a process that intervenes to stop someone suffering or dying. In cases involving young people, the best way to do this may be through proactive screening. The majority of conditions—but not all—associated with sudden cardiac death in the young can be identified on the basis of an electrocardiogram, or ECG, abnormality. That is the type of screening that Stephen and Gill, and other parents like them, and CRY fundraise and campaign for, sometimes resulting in follow-up tests. Approximately one in 300 people screened by CRY will be identified as having a potentially life-threatening condition, and one in 100 will be identified as having a condition that could cause significant problems by the ages of 40 or 50. Those conditions need to be monitored every three to four months, so that action can be taken when most appropriate.
As my hon. Friend the Minister knows, in 2019 the UK National Screening Council recommended against a systematic screening programme for cardiac conditions in the young. There is set to be another review by the end of this year. I would like to speak briefly first on the previous review, and then on the future one.
One of the reasons cited for not rolling out a screening programme was the continuing uncertainty over the true incidence rate of sudden cardiac death. To say that there was not a consensus on what that figure was would be a gross understatement. I cannot stress enough how important it is that we have accurate data on that issue, especially if it is influencing clinical or policy decisions.
In preparation for this debate, I spoke to representatives from CRY. They said that, just on the basis of the number of autopsies they are performing at their centre for cardiac pathology each year, we are disastrously underestimating the full extent of the problem. I want my language to be very clear, so I repeat that they say that we are disastrously underestimating the full extent of the problem.
In order to shed light on the issue, one of the stakeholders contributing to the review stated that it would be
“very helpful if the review outlined more specific research recommendations, providing potential researchers with a framework of the characteristics of a project that could address the uncertainty.”
I have spoken to others involved with the review, who advised me that that framework was not in place. I would be grateful if the Minister could urge the UK National Screening Council to provide clarity, so that we can get reliable data that we can use to make policy decisions. Without that, we risk having an unhelpful fog shrouding this issue; if we do not dispel it, we may lose more lives to undiagnosed heart conditions.
Similarly, there are questions about testing accuracy. Some stakeholders have asked for more specific research recommendations. In particular, it is really important to specify the test, or group of tests, that would enable simultaneous screening for all the potential causes of sudden cardiac death. Again, I ask the Minister to push for those recommendations to be laid down, so that the scientists can get on with the job that they do best.
Looking forward to the next review, I would be grateful if the Minister confirmed a timeline for when this will be completed and when we should expect the findings to be published. It is important to note that several other countries are steps ahead of us when it comes to proactive screening programmes, and, although I appreciate that these might be out of scope of the review, I do think it would be a missed opportunity not to raise them. Several American sporting bodies—
Gerald Jones (Merthyr Tydfil and Rhymney) (Lab)
I congratulate the hon. Lady on securing this debate. My goddaughter, Sophie Pearson, passed away in 2006 at 12 years of age from cardiomyopathy. Sophie’s parents spent many years helping to raise awareness and raise funds. I congratulate the hon. Lady on the work that she is doing and hope that the awareness that she is raising today will go some way in supporting families and avoiding unnecessary deaths of young people.
Holly Mumby-Croft
I am terribly sorry to hear what the hon. Gentleman said, and I thank him for his intervention.
Let me continue on the sporting aspect. Italy has introduced pre-participation screening. Although I appreciate that there are issues with extrapolating the data to the non-athletic population, one study in 2006 did show that screening led to an 89% fall in sudden cardiac death in that cohort.
I know that every Member in this House will be united in wanting to reduce the number of young people dying from undiagnosed cardiac conditions, and expanding access to the screening available will help to reduce that.
Andrew Percy (Brigg and Goole) (Con)
I thank my hon. Friend for giving way and pay tribute to her constituents who are with us today for doing so much to raise funding for screening in our area. She is talking about the important issue of screening, particularly in relation to young people and sporting activities. Is it not also important that we ensure that sports facilities have access to defibrillators for when cardiac arrests take place? She will know that, through North Lincolnshire Council, scores of defibrillators have been funded across our area. With the Government announcing a £1 million fund to expand defibrillators, is it not important that that fund also takes into account sporting clubs and the issue around young people and sudden cardiac arrests?
Holly Mumby-Croft
I thank my hon. Friend for his intervention. I know that he is very well placed to have a view on this matter through his work as a first responder in our community—something that he has been doing for a number of years—so I listen very carefully to him when he raises points around health and care.
I would be grateful if the Minister pushed the points that I have made in relation to the review, with scientists and stakeholders calling for more research to be done. I would also be immensely grateful if the Minister found time—I know that he is incredibly busy—to meet Stephen, Gill and myself to talk about this issue. That would be very much appreciated.
That takes me to the last point that I wish to make, which is once again to thank Stephen and Gill for the work that they have done. Their experience, and Nathan's experience, was a tragic one. Despite that, they have managed to do fantastic work in our community. I know that, along with me, everyone that they have helped through screening, such as those 10 people who have been referred for further testing, will be extremely grateful to them. I often say in this House, Mr Deputy Speaker, that we have many people to be proud of in Scunthorpe. The work that Stephen and Gill are doing puts them very firmly in that category, and I want to be clear today that they have both my support and my thanks.
The Parliamentary Under-Secretary of State for Health and Social Care (Neil O’Brien)
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.
Question put and agreed to.