If you have not already responded to the consultation please consider this by sending an email to firstname.lastname@example.org with your response before the deadline of 7th September 2019. All responses will be published on their website after the UK NSC makes its final recommendation. For more information on the consultation go to https://legacyscreening.phe.org.uk/suddencardiacdeath
Cardiac Risk in the Young is campaigning for all young people to have the opportunity to have their hearts tested and we would urge people to respond to the consultation to ensure as many views as possible are taken on board. If you are a family who has suffered a tragedy it is important that they understand the impact this has had on your family and friends. If you are a young person who has been diagnosed with a heart condition they need to know about how you have been able to adjust to the condition. If you are one of the 200,000 young people who have been screened by CRY please tell them about your experience, how did you find the screening.
The NSC consultation document does NOT recommend population screening for sudden cardiac death in the young and we have many concerns about this recommendation as well as the basis for this conclusion.
• It FAILS to stress that 1 in 300 people screened have a cardiac condition that can benefit from treatment or lifestyle advice.
• It FAILS to objectively evaluate the overlap between the current routine use of the ECG in the NHS / medical practice for general diagnostics and monitoring and its role in cardiac screening. For instance;
o the contradictory position of the NSC where the ECG IS an accurate test if you experience symptoms, but the ECG IS NOT an accurate test if you DO NOT experience symptoms.
NICE T Loc guideline https://www.nice.org.uk/guidance/cg109/chapter/1-Guidance… where ECGs are an essential part of assessment for people who have a temporary loss of consciousness.
o the routine use/requirement of ECGs in screening programmes
pharmaceutical drugs trials
army recruits https://apply.army.mod.uk/…/soldier-recr…/soldier-assessment
commercial pilots https://www.baatraining.com/the-aviation-medical-exam-what…/
pre operations assessments https://www.escardio.org/…/When-to-perform-pre-operative-ECG & https://www.nice.org.uk/…/tests-before-surgery-pdf-31411086…
o it contradicts the information on the NHS choices website (e.g. WPW)
WPW is one of the most common conditions identified in the CRY screening programme, affecting more than 1 in 700 young people.
The NHS states “it may only be picked up when an ECG is carried out for another reason. In these cases, further tests will be done to determine if treatment is required… with treatment, the condition can normally be completely cured…..WPW syndrome can sometimes be life-threatening………..and treatment can eliminate this risk”
• It FAILS to frame the consultation correctly. The current NSC screening programmes (e.g. breast cancer) focus on identification of conditions/diseases, whereas this policy is framed as identification of the risk of sudden cardiac death. The framing of the issue should be consistent with the other NSC policies, “screening for cardiac conditions in young adults”.
• The NSC is requesting for Randomised Controlled Trials to be conducted. This is UNETHICAL and would lead to young people dying in the pursuit of “better” science.
• The NSC consultation document FAILS to demonstrate the impact young sudden cardiac deaths have on our society.
A key issue in understanding the impact is understanding (and correctly interpreting) the incidence of Young Sudden Cardiac Death
The NSC document states, “There continues to be uncertainty as to the true incidence of SCD, although most studies in the general population reported an incidence of between 1 and 2 cases per 100,000 person-years.”
CRY’s research has shown an incidence of 1.8 deaths per 100,000 per year in the UK. This equates with 12 young sudden cardiac deaths per week, more than 600 young sudden cardiac deaths per year in the UK.
The NSC refers to this as “low incidence”. However, sudden cardiac death is one of the most common causes of death in young people, the most common cause of death in young athletes and has a massive impact on family, friends and local communities
It is unacceptable that hundreds of young people continue to die suddenly every year from cardiac conditions which could be identified through screening with an ECG.
Please consider responding to the consultation by sending an email to email@example.com with your response before the deadline of 7th September 2019
Dr Steven Cox – CRY Chief Executive