For over a decade, February has been recognised as Heart Month – a global awareness initiative, highlighting the prevalence and impact of heart conditions on people of all ages.
Originally created in the U.S. back in 2009, the campaign took a couple of years to become fully established in the UK – however, CRY was amongst the first of a few charities to take up the mantle, and most importantly, take ‘ownership’ of the campaign on behalf of young people and their families who have been affected by the tragedy of young sudden cardiac death.
As the campaign kicked off in America, CRY chose to focus its efforts around Valentine’s Day 2009. Speaking at the time, CRY Founder Alison Cox MBE said: “Valentine’s Day is traditionally a time for being with your ‘loved one’ – but for the thousands of families who have been affected by sudden cardiac death, it all too often becomes a time for remembering a loved one and thinking about the time and the future that has been cruelly taken away from you… we must also use this time [and campaign] to look to the future and our vision of promoting awareness among health professionals parents and the public and increasing access to screening across the UK.”
A communications plan was developed in partnership with CRY’s Consultant Cardiologist, Professor Sanjay Sharma, to highlight the thought-provoking issue of “Life Years Lost…”.
This theme was very much something Prof Sharma strongly believed in. He felt it was vital that the medical community, MPs, young people and the general public were fully aware of the scale of the conditions that were “striking apparently fit and healthy people without warning.” However, far from being a one-off media and awareness campaign, the concept of life years lost (which is now based on and amplified by a further 10 years of research and knowledge) is something that Professor Sharma will often refer back to at international conferences, interviews with journalists, social media posts and, of course, at CRY’s annual Parliamentary Reception.
As the campaign was unveiled, Prof Sharma said: “We currently estimate around 600 young people die suddenly every year in the UK from sudden cardiac death – and that figure could just be the tip of the iceberg. Many of these young people are in their teens and early-twenties – at the prime of their lives. Looking at predicted life-expectancies for the 21st century, we can assume that the majority of these young victims are being robbed of 50 to 60 years of their lives. Poignantly, their families are being robbed of their futures and watching them ‘grow up and grow old.’
“The tragedy is that these deaths are not ‘freak’ accidents. They are preventable deaths that could have been avoided if young people – especially those involved in regular sport – were being offered screening and if generally we were all more aware about the importance of understanding the history of our family’s health.”
He added: “Most conditions that cause sudden cardiac death in the young are rare when compared with coronary heart disease but the impact of potential life years lost due to these deaths is striking.”
To support the roll out and regional appeal of CRY’s first ever February awareness campaign, an opinion poll was also commissioned to gauge the public’s awareness and understanding of young sudden cardiac death. A series of regional press releases were developed and distributed to local media across the UK from Scotland to the South East; the Midlands to the South West and Wales. The results varied from region to region but the survey certainly flagged an overall lack of awareness of the scale of YSCD and the efficacy of the ECG test… and created a foundation for much work (in terms of spreading the word about screening) for CRY to spearhead over the next decade and beyond.
A ‘love letter’ project was launched amongst CRY’s Patrons, asking them to complete in their own words, the simple phrase, “Cardiac Risk in the Young has a special place in my heart because…” The initiative struck a chord with our supporters, who replied with a range of inspiring quotes, including TV presenter and best-selling author David Walliams OBE, Gold Olympian James Cracknell OBE, and football legend Pat Jennings OBE.
The campaign also captured the imagination of the British media with Alison Cox taking part in a number of national newspaper interviews and appearing on the ‘breakfast sofa’ at GMTV, alongside a young CRY case study, Jack Mason, who had been identified with – and successfully treated for – an underlying heart condition.
There was little doubt that CRY had achieved its objective of aligning the charity with February, establishing a ‘connection’ to Valentine’s Day and using it as a platform, at the start of every year, to raise awareness of young sudden cardiac death.
As Heart Month developed into the annual 4-week campaign we know today and became a firm fixture on the media calendar, the Comms and Press team at CRY continued to develop news stories, seizing the opportunity to release details about research, screening milestones and bereavement support.
By 2014, Alison felt the timing was right to launch a new booklet in CRY’s ‘Grief’ series and that Heart Month, and more specifically, Valentine’s Day, would be an appropriate platform.
The booklet, “Young Sudden Cardiac Death: A Partners’ Grief” featured 10 personal essays, written by young people who recounted and talked through their personal experience of suddenly losing their partner to a previously undiagnosed heart condition.
Alison explained: “I have supported hundreds of bereaved families and their experience of grief – whilst always raw – is individually totally different, regardless of their relationship with the person who has so suddenly died. But, there is something… terribly poignant and deeply moving about young people losing their chosen ‘life partner’ at the very beginning of what should have been a long and happy union.
“Some were about to get married, others had just married. Some were planning to start a family in the near future, others had just had children. Some of these courageous young men and women tell how they have eventually come to terms with their sorrow and somehow managed to move on and find a new partner. Others are as yet unable to. However, their mutual message is the same – a commitment to working with CRY and trying to help others enduring the struggle of coping with the kind of tragedy that they have experienced”.
The campaign was incredibly successful in terms of raising awareness, resulting in widespread media coverage across the UK’s regional media, fronted by the incredibly brave and committed authors. Two deeply powerful features were also published in The Guardian and Daily Mail.
Over the years, CRY has also strived to develop and craft a new and unique media angle for this important campaign and awareness-raising campaign. Our ongoing ‘lobbying’ for a national screening strategy, research updates and individual case studies have all featured as part of our awareness programme in February.
In 2017, CRY’s Chief Executive, Dr Steven Cox, used Heart Month as an opportunity to post a hard-hitting blog on the MP ‘portal’, Politics Home, warning: “Rates of young people dying from cardiac arrest 12x higher than official statistics”.
The following week, Dr Cox published a second blog, this time in the Huffington Post, outlining and explaining the differences in genetic testing for bereaved families and proactive screening in asymptomatic young people, in terms of preventing young sudden cardiac death, again, issuing words of caution: “Cardiac Screening; Don’t Wait Until It’s Too Late…”
CRY has never been afraid to challenge and tackle difficult issues head on during Heart Month!
And, 10 years on from our original national opinion poll, in February 2019, CRY commissioned another survey to assess awareness of cardiac screening. Encouragingly, of the 18-34 age group questioned, over two-thirds (67%) of men and 71% of women said they would like “the opportunity to book in for cardiac screening (with an ECG) before reaching the age of 35”. Awareness and understanding were definitely improving but the research showed there was still a need for organisations such as CRY to continue educating young people, their parents and policymakers about any continued misconceptions about cardiac screening, how we can best identify these conditions.
So, 2021… well, Heart Month is set against the backdrop of the one of the toughest years that CRY has experienced – as has been the case for thousands of charities across the UK.
Our 25th anniversary simply wasn’t able to go according to plan during 2020 – although we will be extending this special year across the course of 2021, to allow families to re-design and reschedule some of the key events they’d planned to hold in honour of CRY’s quarter of a century milestone.
And, for those who wish to get back out there – whether on your bike, on foot or in the water – we are thrilled to be launching the exciting and innovative new 25 Million Metre Challenge, during Heart Month 2021. Developed by one of our original myheart group members, Tony Eames, the interactive fitness platform (compatible with Strava, Fitbit, Garmin etc.) will make it easier than ever for CRY ‘teams’ to work together (but all at safe distance) as you clock up the metres, clock up awareness and clock up funds!
We kicked off Heart Month on the morning of February 1st, with an in-depth interview on Sunrise Radio (CRY’s charity partner for 2020 and 2021) with Dr Sabiha Gati. Sabiha is a former CRY Research Fellow, who continues to play an instrumental role in our screening and research programme and is now heavily involved with our myheart group. She now works as Consultant Cardiologist at the Royal Brompton & Harefield NHS Foundation Trust, with a specialist interest in ECGs, inherited cardiac diseases and sports cardiology.
What better example could there be of CRY’s commitment to training up a new generation of specialist cardiologists, to be shared during Heart Month 2021!
So, finally, do keep a close eye on CRY’s social media platforms all month for updates on fundraising and research as well as news on what our supporters across the UK are doing to mark Heart Month. The CRY team is encouraging everyone to do what they can to help raise awareness and funds through virtual or individual challenges!