Press release – 1st March 2006
Today, Cardiac Risk in the Young (CRY) publishes the results of a new survey which indicates that one year on since the introduction of Chapter 8: Arrhythmias and Sudden Cardiac Death of the National Service Framework for Coronary Heart Disease, a staggering 97% of all Primary Care Trusts (PCTs) interviewed said they had failed to develop a strategy for implementing any of the new Chapter’s specific guidelines for children and young people.
Nearly 100% of all PCTs interviewed said they were aware of Chapter 8 – which makes the findings all the more damning.
CRY was instrumental along with other campaigners for securing the implementation of Chapter 8 into the National Service Framework, which sets out guidelines on how NHS services should identify people who are at increased risk of sudden cardiac death and how to assess them and their families to reduce their chances of dying from an arrhythmic condition. It also sets out best practice for those diagnosed with a potentially life threatening condition, and their families, to receive appropriate counselling, advice, information and psychological support.
The survey of PCTs, GPs and the general public reinforces concerns by CRY that no significant progress has been made to address the 400 unexplained sudden cardiac deaths of young people every year. 84% of GPs interviewed said they had experienced a young sudden cardiac death in their practice which suggests that the real number of young deaths is considerably higher than those officially logged.
Speakers and CRY supporters at the Press Release. Left to right: CRY Patron Jeremy Bates; Andy Scott; Caroline Gard; CRY Chief Executive Alison Cox; Stephanie Hunter; CRY Chairman Professor Greg Whyte; Simon Halliday; CRY Patron Mark Cox.
Accurate statistics are not available. In the UK unexplained sudden death is frequently recorded as death from natural causes. Until the law is changed and coroners have to refer hearts on to specialists the true figures will never be known.
CRY has been working tirelessly to raise awareness of Cardiac Risk in the Young since its inception in May 1995. Founder and chief executive Alison Cox is frustrated by the lack of progress since the new Chapter 8 was introduced last year: “The research we had commissioned confirms our worst fears – that very little has been done to address what we perceive to be a growing problem in young people. Electrocardiogram (ECG) testing in the young is vital if we are to reduce the number of unnecessary deaths – but this needs to be followed up with a referral to a cardiac specialist.
Cox added: Although nearly 70% of GPs said they had a 12 Lead ECG machine in their practice, rather worryingly, nearly two thirds of all GPs interviewed said they would not refer young people who have had an ECG on to a Cardiologist for diagnosis. It is this level of expertise which should be accessible to all and is vital if specific cardiac problems are to be properly identified and young lives are to be saved.”
CRY’s robust campaign to raise awareness of young sudden cardiac death is proving effective – 65% of the general public are aware that the condition is something which can affect people aged 35 and under – significantly, nearly 30% knew of a young person who had died from an unexplained or sudden cardiac death.
Both samples of PCTs and GPs, 78% and 82% respectively, said that where a young member of a family (35 and under) dies as a result of an unexplained or sudden cardiac death, they would approve or refer other members of that family to be seen at an Inherited Cardiovascular Disease Clinic.
Later on today, CRY will be calling on the 86 strong members of the All Party Parliamentary Group for Cardiac Risk in the Young, to put pressure on the Government and influence change through ensuring rapid development of the Chapter 8 strategy. This means taking action now if countless young lives are going to be saved.