Sudden Cardiac Death: Young People

Debate between Holly Mumby-Croft and Gerald Jones

Wednesday 1st February 2023 Commons Chamber

[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.