Rates of young people dying from cardiac arrest 12x higher than official statistics, warns leading charity
PoliticsHome speaks to Cardiac Risk in the Young’s CEO, Dr Steven Cox, about why sudden death syndrome in the young is not the ‘tiny issue’ the National Screening Committee has made it out to be.
Last year, the National Screening Committee released a report which appeared to claim one person a week died from young sudden death. Comparing the death rate of these young people to coronary related deaths of the elderly, the report referred to these fatalities as a “tiny issue” and ruled out implementing a UK-wide cardiac testing programme for the prevention of sudden cardiac death in young people.
Speaking to PoliticsHome, CEO of the leading charity Cardiac Risk in the Young, Dr Steven Cox explained why the report was a source of great concern.
“To refer to this issue as a tiny issue is a huge insult to the families have gone through the suffering and as well as their wider family, the community, the friends, and the relatives.
“This is not a tiny issue and that sort of language is not helpful and it shows that they have not even taking this as a serious issue.”
Even more alarming than the language used in the report, remarked Dr Cox, is the inaccuracy of the facts. According to CRY, every week in the UK there are at least 12 – not one - apparently fit and healthy young people (aged 35 and under) who die suddenly from a previously undiagnosed heart condition. In 80% of cases of young sudden cardiac death, there are no signs or symptoms and CRY now tests 23,000 young people every year across the UK.
The organisation believes the UK needs a national strategy to ensure the guidelines and policies to prevent young sudden cardiac death are consistent. The first stage of a national strategy should be to correctly acknowledge the incidence of these deaths.
Following the NSC report, CRY received a further blow in form of a letter sent from the UK National Statistic Authority to the Government claiming the number of young sudden cardiac deaths was noted as 31 in 2014.
These figures simply do not ring true for the CRY CEO: “We know that there's a major problem, we are contacted by families every week after tragedy. We know the numbers are not 31, that's a ridiculous thing to say.
“When we conduct a post mortem and that evidence is there in front of us and by that I mean a dead child, or a young person, - we feel that has to be treated as important,You can't refer to statistics and say there's only one sudden death a week when we're conducting four post-mortems a week.
“The figures need to be correct. It doesn't matter what the statistics say from a study which was published in America based on flawed evidence. We are conducting work in the UK which completely contradicts that. I would like to invite people from the National Screening Committee to our centre for cardiac pathology because then they can see the evidence in front of them. We're not trying to shy away from what's going on, we want to engage in this process.”
CRY has launched the YSCD campaign (www.yscd.org.uk) to correct the record by highlighting the true number of people dying from these conditions. The campaign is asking all families who have suffered a sudden death to sign up in an effort “to ensure that the UK Government is made aware of the true extent of the tragedy.”
Dr Cox emphasised the importance of getting the figures right, saying: “At the moment, it would appear that the statistics are being manipulated and we need to actually focus on ‘faces behind the figures’.These are real lives that are being lost and real families who being left devastated. They are more than just numbers and deserve recognition of this.
“The Department of Health and large research organisations such as the British Heart Foundation are accepting there are 12 deaths a week and yet the National Screening Committee is presenting data which suggests there's only one!That's crazy! So, our first aim is to bring the relevant parties together to debate the evidence and to agree the impact of these conditions on our society. We hope that debate will happen later this year.”
This disparity is problematic for numerous reasons - namely because these stats inform politicians and the wider community about the scale of the problem.
CRY is urging all MPs to sign a pledge to support a National Strategy for the Prevention of Young Sudden Cardiac Death to help save young lives.
So far, over 30 MPs have signed up to support the pledge and they are continually coming in each day.
However, CRY has found that in some cases when a family writes to their MP following the loss of their child to ask them to do more, the MPs quote the National Screening Committee’s figures at them.
“We've seen many MPs responding to their constituents with, ‘Well, the national screening committee has assessed this and they don't think there should be screening. We've given a million pounds to defibrillators and also there's some research being funded by the National Institute of Health Research’. The suggestion there is, they feel enough is being done.”
Dr Cox explained that CRY supports the placement of AEDs (automated external defibrillators)in the community as part of a wider strategy to prevent the incidence of young sudden death. However, as the majority of these deaths occur in places where defibrillators are not available – such as in the home when a young person is sleeping - this measure is not enough.
"The AEDs are not going to have a massive impact on young sudden deaths. We will therefore be asking our constituents to re-engage those MPs to say this is not about screening, this is not about AEDs, this is about us officially recognising the scale and impact of these 12 young sudden deaths every week and accepting as a society that something needs to be done urgently to prevent these tragedies occurring.”