“Just prior to Christmas Day, the UK National Screening Committee published its conclusion to the consultation reconfirming the UK NSC does not recommend systematic population screening for cardiac conditions associated with Sudden Cardiac Death in the young.
No signs or symptoms
“The first point to address is that, as a charity driven by a mission to prevent young sudden cardiac death through proactive screening and research, we completely disagree with the repeated concerns raised about the accuracy of the ECG (electrocardiogram) test.
“As CRY has previously highlighted, the 12-lead ECG test is currently recognised by experts worldwide as the ‘gold standard’ test for identifying cardiac abnormalities and signposting a need for further investigations such as echocardiogram scanning, MRI and genetic testing.
“It is a routine, first line test when a doctor is concerned about a patient’s heart. The reality is this is usually only offered to older people. Again, we ask, why should young, apparently fit and healthy young people, who may be harbouring a hidden heart defect, not have access to the same, simple and inexpensive lifesaving test?
“And, whilst the report goes on to imply that testing in sport – and when symptoms are present is warranted – the NSC has not been explicit about this.
“It goes without saying that CRY believes ALL young people should have the opportunity to be screened, because the majority of young sudden cardiac deaths are not in elite athletes and in 80% of the tragedies there are no signs or symptoms. All too often, the first sign that anything is wrong will be the last sign.
“The conclusion of the NSC also contradicts what is already routine practice within the NHS, as we raised during the consultation. The perception patients have of their symptoms and how this is interpreted by a GP is rarely clear cut. Many people will fall into a grey area where symptoms (e.g. breathlessness, blackouts) are easily dismissed by GPs partly because they are so common, and GPs do not have the resources or training to enable every person with symptoms to be tested.
“The current position of the NSC to encourage all people experiencing symptoms to go to their GPs for investigation is therefore not viable in practice and it is unreasonable to expect GPs to be able to read ECGs to the same standard as a specialist cardiologist.
“Throughout the consultation, we were frustrated that the NSC was not willing to meet with CRY to discuss the concerns we had raised about the apparent understanding (or, misunderstanding) of the incidence of young sudden cardiac death. Thanks to 10 years of funding of the CRY Centre for Cardiac Pathology (at a cost of £1,000,000) the vast majority of SADS deaths are now investigated at the Centre, giving CRY a unique insight into how many families are affected by young sudden cardiac death. It appears the NSC is underestimating the incidence of young sudden cardiac death by at least 10-fold, and almost 100-fold for high risk groups.
“We believe this fundamental misunderstanding of the epidemiological data of how many people are affected is central to why they are still referring to this as ‘very rare’ and ‘tiny’ when compared to heart attacks in the elderly.
“Young sudden cardiac death is one of the most common causes of death in young people and the most common cause of death in young athletes. It is unacceptable to continue to frame the issue in this way.
“Whilst we were very disappointed the NSC was not willing to meet during the consultation to discuss the major concerns we had about the way they had misunderstood the incidence, we have been reassured that now the consultation is over they have agreed to meet with us and we will be able to address this issue. We trust they will advise how they would like to present the pathology research data held by CRY to ensure the policy in the UK is informed on a sound scientific basis.
“CRY will continue to engage MPs in our campaign to establish a national strategy to prevent young sudden cardiac deaths. This is important to ensure all policies in the UK are consistent and we hope the key recommendations from the recent review of adult screening programmes (October 2019) will be taken on board to enable this, establishing a single advisor body bringing together the UKNSC and NICE.
“However, the first key issue is for a national strategy to correctly establish the accurate incidence of young sudden cardiac death. As long as this is underestimated the government will underinvest in research, underestimate the impact young sudden cardiac deaths have on communities throughout the UK, and fail to recognise the cost-effective tools we already have that could prevent these tragedies.”
“2020 is CRY’s 25th anniversary year. 25 years ago, CRY was established to prevent young sudden cardiac deaths through screening and research. It is unacceptable for a progressive society to turn its back on 600 young deaths every year and the horrendous impact it has on every family, friend and local community. It is unacceptable to leave it up to the bereaved families to raise the funds to provide the research and resources that are so important to save young lives.
“CRY will not accept the suggestion that these tragedies are unavoidable. We will continue to screen more young people and invest more than ever before into research to prevent young deaths.
Through research, we will change policy
Through screening, we will save young lives