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Young people lose out on ‘lifesaving’ heart screenings due to lockdown

25,000 appointments cancelled due to COVID restrictions leaving people age 14-35 at risk of hidden heart conditions

A leading heart charity – which would usually provide free heart checks for over 32,000 young people every year in the UK – has warned of the potential impact of having to halt its specialist services over the past 8 months.

The campaign is backed by a family from Surrey whose 14-year-old son was diagnosed with a dangerous and potentially life-threatening heart condition (Wolff-Parkinson White syndrome) at a CRY screening session shortly before lockdown and the suspension of the service. Due to his swift diagnosis – despite displaying no worrying signs or symptoms – he has now been successfully (surgically) treated and back living a normal, safe, and active life.

But the outcome could have been so different…

Powerful feature articles focussing on the recent experience of Finn Mason – and fronted by his mum, Niki, who has become a key advocate of the campaign, have been published across the Surrey and SW London media, as well as full-page articles in the national press, including the Daily Mirror, Daily Express and Daily Record, helping to generate incredible awareness for CRY and its work.

Young sudden cardiac death (YSCD) claims the lives of at least 12 seemingly fit and healthy young people every week in the UK. In around 80% of cases of these arrhythmias and heart muscle conditions (cardiomyopathies) there will have been no signs or symptoms – but the vast majority of the underlying and ‘hidden’ issues that cause such fatal cardiac arrests can be identified using a simple ECG test, which is assessed by a specially trained cardiologist.

Dr Steven Cox, CEO of the charity Cardiac Risk in the Young (CRY) which was established 25 years ago to support families affected by YSCD and to help prevent these devastating young deaths, explains;

“CRY stopped screening on March 16th, 2020, as part of the UK’s initial national lockdown measures. This was around the same time that NHS Breast and Cervical screening services were temporarily stopped – although these are now coming back into practice – and understandably there were immediate concerns about ‘footfall’ (we test around 100 people a day at a CRY testing session) and PPE health and safety needs of our medical staff.

“However, now, 8 months on, we have had to cancel over 21,000 screening appointments and we remain uncertain as to when and how we will be able to resume our internationally acclaimed screening service.

“CRY research and international statistics suggest this current hiatus may have already resulted in more than 70 young people NOT receiving a diagnosis of a potentially life-threating condition and the treatment, lifestyle advice or surgery that would reduce their risk of suffering a cardiac arrest. Worryingly, our waiting list of young people who have registered an interest in screening now stands at just under 40,000.

“Every subsequent month that screening events are cancelled or postponed will result in the loss of a further 3,000 appointments and another 10 people being left to live with an undiagnosed cardiac condition that could cause them cardiac arrest and sudden death. It is important to note these figures do not include the 100s of young people who are identified with cardiac conditions through screening which may not be immediately life-threatening, but will lead to serious problems in their fourth or fifth decade of life if they are not identified, monitored and treated.”

“We cannot allow these young people to become part of the devastating “12 a week” statistic.

Dr Cox continues; “We’ve worked really hard to ensure our screening team is appropriately prepared [in terms of PPE], with revised protocols in place [in terms of social distancing and enhanced cleaning] and are ready to get back on the road.

“But what we desperately need – once this second lockdown is eventually eased – is access to suitably large venues. CRY’s families and fundraisers would usually be able to secure the use of schools, sports clubs, 6th form colleges, universities, community centres and church halls etc. at no charge. Understandably, these types of venues cannot currently invite any additional people to come onto the premises.

“We are doing all we can to resume CRY’s screening programme safely, rebooking events and working through our ‘backlog’  – and to ensure that awareness of the importance of cardiac screening in young people does not diminish.”

The majority of CRY’s community screenings are funded by bereaved families, who have been affected by a young sudden cardiac death, so there is no charge to the individual when CRY’s mobile cardiac screening service comes to a local venue. In normal times, CRY-funded screening clinics are also held twice a month at St George’s Hospital, South West London, home to CRY’s pioneering Centre for Inherited Cardiac Conditions and Sports Cardiology.

The CRY screening programme uses a very simple, effective and non-invasive way of diagnosing most cardiac abnormalities. It is a quick, painless and affordable procedure called an electrocardiogram (ECG). If a young person is found to have an abnormality, CRY will also conduct an Echocardiogram (ultrasound) on the same day. To date, over 220,000 young people have been screened by CRY – and many young lives saved.

In Italy, where screening is mandatory for all young people engaged in organised sport, they have reduced the incidence of young sudden cardiac death by 89%. This is because sport – whilst it does not actually cause sudden cardiac death – can significantly increase a young person’s risk if they have an underlying condition.

Professor Sanjay Sharma (St George’s, University of London) is CRY’s Consultant Cardiologist and oversees the screening programme. He concludes;

“Although cancellation of these clinics is completely understandable to minimise the spread of the viral infection, there will be a number of young people who will not receive a diagnosis and treatment of a potentially serious, and probably silent, cardiac abnormality. I therefore really hope these individuals will still be motivated to sign up to be tested again in the future, as soon as we able to resume our services.

For more information or any press inquiries about CRY, please contact; jo.hudson@trinitypr.co.uk

Two internationally renowned cardiologists to host live webinar on new guidance surrounding ‘safe exercise’ in the Covid-era and how to prepare for a return to sport

NEW PAPER IN THE EUROPEAN JOURNAL OF PREVENTIVE CARDIOLOGY PROVIDES EXPERT GUIDANCE FOR ‘SAFE EXERCISE’ IN THE COVID-ERA & HOW TO PREPARE FOR A RETURN TO SPORT

  • Recommendations led by a team of UK-based cardiac researchers receive endorsement from the European Section for Sports Cardiology & Exercise
  • Published paper provides practical answers to key questions posed by the international sporting community, ahead of a phased return to some professional sports, such as the Premier League football
  • Evidence shows that regular, moderate exercise strengthens the immune system and may reduce risk of viral infection
  • Athletes can suffer psychological problems due to “sudden withdrawal of training stimulus” during lockdown
  • Research shows that in up to 30% of COVID-19 patients admitted to hospital, a significantly raised troponin level was identified, often leading to ventilation and poorer outcomes
  • Algorithm to guide athletes, club doctors and sporting bodies to ensure safe return to training in those with confirmed or suspected COVID-19
  • Two internationally renowned cardiologists to host live webinar on MONDAY 15 JUNE @3PM to talk through the Guidelines and help unpick myths about COVID-19 & sport

The impact of the COVID-19 pandemic on the global sporting community has been immense, disrupting fixtures, contracts, training schedules and those mass-participation events once thought to be immovable and untouchable, such as the London Marathon and the 2020 Olympic Games.

But it is the impact – both physiological and psychological – on individual participants that is coming under greater scrutiny as a gradual loosening of the international lockdown starts to see training and competition slowly reintroduced. And with this, comes many pertinent questions and concerns from club doctors and athletes alike.

In response, a new published paper is helping all stakeholders in professional and elite sport to navigate evolving research and advice and to effectively and safely prepare for a return to competitive sport in the current and post-pandemic era.

The publication originated from a team of Research Fellows funded by Cardiac Risk in the Young (CRY) and is led by Dr Michael Papadakis and Professor Sanjay Sharma from the unit of Sports Cardiology and Inherited Cardiac Diseases at St George’s University, London.

He explains; “It’s so important to highlight – whether an elite or recreational or even a beginner athlete – is that is still ‘safe’ to exercise during this COVID-era. There is evidence that moderate exercise performed for 20-30 minutes, 3-4 times per week strengthens the immune system and reduces the risk of viral infection. Scientific studies have shown that this regular moderate exercise prior to developing a potentially serious viral infection such as flu protects people dying from it.

“Interestingly, previous research has shown that people who continued to remain active during the 1998 Hong Kong flu were more likely to survive compared to people who did not perform any exercise.

Although athletes are accustomed to exercising more intensively than the general population, it is recognised that rigorous exercise causes stress on the body, leading it to become run down and more prone to infections. The new publication states there is currently no evidence to suggest that athletes are especially susceptible to COVID-19 infection, but the pragmatic position remains that athletes should not try to exceed the intensity of their usual training programme in regions of the world where the pandemic is still at its peak.

From the early days of the pandemic, there was concern of a small percentage of patients who required hospital admission displaying signs of inflammation of the heart muscle – a condition known as myocarditis.

It is unlikely that a COVID-19 patient’s heart will be affected if they are only presenting mild symptoms and are adopting self-care at home – but patients do need to be aware of chest pain that may be made worse by breathing in deep, increasing breathlessness and palpitations (racing heart). In such cases, patients should contact their GP, Club Doctor or emergency services – and athletes should not exercise if experiencing any of these symptoms.

Dr Papadakis explains; “COVID-19 may affect the heart in a number of different ways. One of the most serious implications is myocarditis, which can be diagnosed by measuring levels of a protein termed cardiac troponin in the blood, which is released by damaged heart muscle. In the case of an elite athlete, this blood test may now be performed by the club doctor or a recommended medical institution or clinic that has the facilities and capacity to test without the risk of anyone else becoming infected.

“If the cardiac troponin level in blood is increased, the doctor will also arrange an electrical tracing of the heart (ECG) and a heart scan and an appointment (potentially still remotely with a cardiologist.”

“Myocarditiscan become very serious, especially if people continue to exercise. This can cause the heart to become damaged permanently and may even cause sudden death.

“So, all guidance states that all exercise should be stopped completely for at least 3 months, to rest the heart. Depending on the results of the follow-up heart scan, the cardiologist may also prescribe medications if the heart appears to have been weakened by the infection. The patient will have another assessment after 3 months to determine if their heart is strong enough to return to sport; some athletes may need to rest for another 3 months.

“Our publication includes an algorithm to guide athletes, club doctors and sporting bodies as to when evaluation by a heart specialist is necessary to ensure safe return to training in those with confirmed or suspected COVID-19. It provides a realistic approach which balances the concerns of the impact of COVID-19 on the heart versus subjecting athletes to unnecessary investigations, taking into consideration available resources for the elite but also for the millions of recreational exercisers.”

The new publication, supported by CRY’s research programme, highlights myriad issues and questions including;

  • specific advice for Marathon runners
  • concerns about whether all athletes should be tested for COVID-19 before returning to their season
  • are they more or less susceptible to becoming infected or experiencing serious side effects?
  • does management of the virus differ in athletes to the general population?
  • what are the effect of “detraining” on an elite athlete?
  • to what level it is safe to train at – during the current pandemic?

To address and discuss these many issues, Dr Papadakis and Professor Sharma will be hosting a live webinar on MONDAY JUNE 15TH@ 3PM There will be no charge made to those wishing to attend the session (whether they are athletes, Club officials and medics, general public, or members of the media) but there will be an opportunity to make a small donation to help support CRY’s research programme through the COVID-19 crisis.

If you would like to register for the webinar go to www.c-r-y.org.uk/covid19

Dr Steven Cox, CRY’s Chief Executive, adds; “We are pleased that our research team have been able to provide the most up to date advice for both patients and the medical community, as well as young people who want to stay as fit and healthy as possible throughout this crisis. This is an incredibly challenging time for everyone and this guidance will help to give people some confidence in their decisions when they are surrounded by so much uncertainty.”

 

CRY’s 2020 Virtual Challenge

Trinity PR has always been proud and privileged to work alongside the team at Cardiac Risk in the Young (CRY) and since 2003, has managed the charity’s busy press office and highly proactive programme of media relations and awareness raising.

2020 was always going to be a big year for CRY. A bumper year of fundraising was in place, due to the hard work and forward planning of CRY’s events team and its incredible network of volunteers and fundraisers across the UK.
And of course, 2020 also marks CRY’s 25th anniversary!

But, despite the unprecedented and potentially challenging times we currently find ourselves in (as is the case for any charity in the UK right now) #TeamCRY still believes it’s vitally important to celebrate their achievements, acknowledge how far they have come in the past 25 years and everything they have done in helping to prevent the tragedy of young sudden cardiac death.

In response to these changing times, this week CRY has launched a new “fundraising hub” which can be found on its website; www.c-r-.y.org.uk, outlining upcoming events later this year; helping to keep CRY fundraisers engaged and part of the CRY-family as well as encouraging supporters to submit Event ‘write-ups’ which will hopefully inspire other fundraisers to start planning and even ‘set the wheels in motion’ for their next fundraiser….as soon as it safe to do so.

Afterall, plans can still be made in isolation. Who knows, perhaps the most innovative, ingenious and inventive fundraiser will be dreamt up during what has become a period of enforced downtime for most of us?
Perhaps the most exciting element of CRY’s new fundraising platform is the introduction of the new 2020 Virtual Challenge.

From this month, CRY is encouraging its supporters to get involved with raising awareness of CRY, and funds (if they wish to) by taking part in the 2020 CRY Virtual Challenge.

Participants can choose any of the listed challenges (or set their own!) to complete within 20 days or by completing 20 repetitions of something all in one day.

As ever, it would be fantastic if photos and updates from the attempted challenges could be shared on social media using CRY hashtag #2020CRYChallenge.

Photos and/or videos can also be sent to CRY’s fundraising team to receive a medal for completing this challenge (events@c-r-y.org.uk). Medals will be sent as soon as it is possible to do so.

Supporters of all ages and abilities can get involved – why not choose a challenge that the whole household could take part in together?

Good luck and thank you for supporting CRY.

#staysafe #staywell #stayhome

2020 CRY Challenge

 

Cardiac Risk in the Young (CRY) echoes the “anger” and “outrage” of bereaved families across the UK as the long-awaited review from the National Screening Committee fails to recommend cardiac screening for young people

Dr Steven Cox, CRY’s Chief Executive, spoke to Trinity and explained his response;

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?

“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.

Grey area

“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 specialist training to enable every person with symptoms to be tested.

Underestimation

“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 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.

Unacceptable

“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.”

Over 1200 young people screened in memory of aspiring squash player

Last week, Trinity announced the news that Cardiac Risk in the Young (CRY) had added an impressive new Echocardiogram to its portfolio of screening equipment used on a daily basis by its team of experts – all thanks to funds raised in memory Harry Faulkner.

Harry Faulkner from St Albans collapsed and died (whilst playing his beloved game, squash, in a league match at Berkhamsted Squash Club) in February 2013 from a previously undiagnosed heart condition. He was aged just 18.

Harry (who was a pupil at Berkhamsted School and British under-19 squash player) was due to begin a degree course at the University of Birmingham. Since Harry’s tragic death, friends and family have campaigned tirelessly to raise awareness and funds in his memory, totalling over £182,000 to date.

This has led to the screening of over 1200 young people at Berkhamsted School and ‘Berkhamsted Raiders CFC” (with 35 individuals identified as needing further cardiac investigations, so far). Harry’s fund has also paid for the new, mobile Echo machine which will be used by CRY’s expert screening teams at events across the UK.

Every week, 12 apparently fit and healthy young (aged 35 and under) people in the UK die suddenly from an undiagnosed heart defect. In 80% of these cases, there will have been no signs or symptoms until it is too late, which is why CRY believes screening is so vitally important (particularly for those involved in regular, physical activity). CRY now tests around 30,000 young people each year, aged between 14 and 35 and well over 200,000 since the screening programme was launched in 1995.

Speaking on BBC Three Counties, Harry’s mum, Donna said, “I’m like a dog with a bone   and I won’t give up in getting the message out there about ‘CRY Screening’. So many young people just think they’re invincible and that it won’t happen to them. But my Harry was so fit. He played squash – a very powerful game – and had no symptoms at all. We had no idea and that is what’s so scary…”

“Just go onto the website and register now. It’s free – the Government doesn’t pay for it but it’s funded by families like us, supported by our friends. If our screenings can save just one life… well, it won’t bring back Harry but it will help us as a family and when we see CRY’s mobile screening unit testing young people in Harry’s memory [in our local area] it makes us so proud.”

Most of CRY’s screenings take place in community settings (schools, colleges, church halls and sports clubs) across the UK. Two Saturdays in every month, around 100 young people (aged 14-35) are also screened for free at CRY’s National Screening Centre at St George’s, London. Many of the young people who are identified through community screenings with potential abnormalities will be referred back to CRY’s Consultant Cardiologist, Professor Sanjay Sharma and his expert team for further investigations, involving the use of specialist diagnostic equipment, including Echo imaging.

In November 2017, one of Harry’s great friends from “sixth form” – the reality TV star, presenter and model, Montana Brown – became an Ambassador for CRY, initially helping to launch the charity’s hugely successful CRY4Friends campaign.

She said; “I am so proud to have been invited to take on the role of Ambassador for CRY in memory of my wonderful friend, Harry. Harry’s sudden death when we were just teenagers, sent shockwaves through our entire community – school, friends, family – and had a massive effect on us all.

“It’s therefore so important for me to do anything I can do to help raise awareness of CRY and everything it does to save young lives through research and its incredible screening programme. I was screened not long after Harry died, and I would urge everyone aged between 14 and 35 to book in now. It could save your life.”

The vast majority of CRY’s screenings are funded by families, such as the Faulkner’s, who have been affected by a young sudden cardiac death, so there is no charge to the individual when CRY’s mobile cardiac screening service comes to a local venue. CRY uses a very simple, effective and non-invasive way of diagnosing most cardiac abnormalities. It is a quick, painless and affordable procedure called an electrocardiogram (ECG). If a young person is found to have an abnormality, CRY will also conduct an Echocardiogram (ultrasound) on the same day for no additional charge.

www.testmyheart.org.uk

Top soap star to be screened by experts from leading heart charity in memory of friend

Trinity PR is delighted to be part of leading heart charity Cardiac Risk in the Young’s (CRY) latest project in its ongoing campaign to raise awareness and to screen more young people potentially at risk from undiagnosed heart conditions across Yorkshire.

A simple and quick ECG test could save the lives of the 12 “apparently fit and healthy” young people that die each week in the UK from undiagnosed heart conditions. This Sunday (15th September), star of ITV’s Coronation Street Colson Smith (who plays Craig Tinker) will help boost these efforts by joining around 100 other young men, women and teenagers aged between 14 and 35 from across the region who will be screened by the expert team from CRY.

The screening day will once again be held by the family and friends of local man Rory Embling, who tragically died in May 2014 from a previously undiagnosed heart condition aged just 26. Colson, born and bred in Castleford, was a great friend of Rory; they were both staunch Leeds United fans and were both involved with Castleford Cricket Club.

Rory’s dad, Chris Embling (who famously built a pub in a shed a.k.a. “Rory’s Return” in the back garden of the family’s home to raise money for CRY in August 2015), says; “We are delighted that Colson – fondly known as Craig to so many of us Corrie fans in Yorkshire and across the UK – is so publicly lending his support to our weekend of screening, as well as taking the wise decision, as a 21 year old, to be screened himself.”

An ECG test is the gold standard diagnostic test used by CRY’s screening team to identify abnormalities that can cause sudden deaths in young people. The test is quick, non-invasive and, if necessary, a further Echocardiogram can be taken on the same day to provide further clarity or reassurance. Thanks to Professor Sanjay Sharma, Professor of Inherited Cardiovascular Disease and Sports Cardiology at St George’s University of London, Medical Director of the Virgin London Marathon and overseer of CRY’s screening programme, CRY can subsidise the programme significantly as she makes no charge for her work. Privately, these tests could cost hundreds of pounds.

Chief Executive of CRY, Dr. Steven Cox, concludes: “CRY now tests around 30,000 young people, aged 14-35, annually. But we still believe screening needs to be extended to all young people”.

Any local person between the age of 14 and 35 can register to have a free cardiac screening at www.testmyheart.org

tel: + 44 (0) 20 7112 4905 • e-mail: info@trinitypr.co.uk • Address: 34 High Street, Ewell, Surrey, KT17 1RW / Privacy Statement

 

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