The Silent at Heart Project

The Silent at Heart Project uses art as an expressive means to promote awareness of sudden cardiac death in the United Kingdom. Read more about this innovative project. Tell us about the South East London Cardiac Network. When and why was the Silent at Heart Project created? These Cardiac Networks have been established and developed across England with the aim of bringing together clinicians, nurses, physiologists, managers and other professionals involved in cardiac care from the NHS organizations within a specific geographic area to work in collaboration to improve services for patients by focusing on the patient journey. The South East London Cardiac Network was established in 2005 to ensure equitable access and quality cardiac services for all patients in the six boroughs of South East London: Bexley, Bromley, Greenwich, Lambeth, Lewisham and Southwark. The organizations involved comprise of six Primary Care Trusts, four District General Hospitals and two Tertiary Centers. In April 2008, the Cardiac Networks’ remit was expanded to incorporate stroke, so it is now known as the South East London Cardiac and Stroke Network (SELCSN). The Silent at Heart Project was conceived in 2006 and developed in 2007 in order to promote information about and raise awareness of sudden cardiac death (SCD) in the young. The statistics are shocking: approximately eight young people (under age 35) die each week of sudden cardiac death in the UK. The idea was to work with a group of young people (16-17 year olds) who would be supported by professional artists in order to produce artworks and films as a response to their personal experiences of being screened for inherited heart conditions. The main focus was to highlight the risk factors (mainly family history of sudden death at a young age) and symptoms that should prompt further investigations. Chapter 8 of the National Service Framework (NSF) for Coronary Heart Disease (Department of Health, March 2005) calls for initiatives to help enable early diagnosis and prevention of sudden cardiac death in young individuals with potentially serious cardiac disorders. The Silent at Heart Project was created as one such innovative imitative. What is the purpose of the Silent at Heart Project? Who is your message intended for (e.g., only children and teens or for the general public?) The main audience for the project’s campaign was young people, but also teachers, school nurses and staff, youth workers and the general public — anyone who could help in encouraging cardiac screening if these risk factors and symptoms are present in the youngsters. We also intended to use the materials produced — especially the CD-ROM — as a training tool for primary care professionals (e.g., practice nurses and general practitioners), mainly because this group of health professionals is usually the first one to have contact with this type of alert. Describe the art works that are shown on the website. Who created these works? Is there any piece that you think is particularly striking? It’s hard to know where to start! The first-hand experience of going through the diagnostic process proved to be a very powerful catalyst for the creative process, and a truly remarkable set of artworks and films were produced by the young people involved in the project and the artists commissioned. Many of the artworks focus on the tragedy of ignorance explored through a wide range of media: contemporary graphics, traditional and digital photography, film installations, and silkscreen and collograph prints. There were also 3D works: a felt dress, a sculpted torso, a heart sculpture, embroidery, and a curtained installation creating an enclosed space, which is an expression by one of the young artists about her feelings of isolation. We chose to work with students from the Christ the King Sixth Form College in London, since they had been touched by sudden cardiac death when a former student, aged 19, died tragically in 2001. Another reason why I decided to develop the project was because my father died at 32 of a heart attack, though at the time, no further investigation was performed. It was only when I started to work with the Cardiac Network that I was made aware through a cardiologist colleague that I was at risk and should get screened myself. I am a bit biased to choose, but in my opinion, the most striking works are a film called “Times Running Out” (https://www.silentatheart.org/artworks/film) and a diptych of paintings by Joanna (https://www.silentatheart.org/artworks/painting/#joanna). The film is about “a young and healthy schoolboy who seems to be experiencing chest pains after playing football. He chooses to ignore these symptoms and not to share them with his friends and teachers. It could all have been different, but his time is running out.” The paintings by Joanna show a family and their incomplete happiness when a young family member suddenly vanishes from an old photograph. Again, the message is clear: a simple cardiac test could have made a big difference in the picture. What message do the artworks convey? Why was it important to use this medium as a form of expression and awareness? As a practicing artist and curator, I have developed other projects that used art as a means of exploring complex biomedical and social issues. I strongly believe that art is a powerful tool of creating a language that will reach much further than the usual channels and methods of public awareness and engagement. I think that if you are especially trying to reach young audiences, the only way to produce any meaningful messages is to let them speak, express themselves and translate their feelings visually; art, music, and film is their language. Are these artworks also put on display at exhibitions or at medical conferences? What has been the general response to these artworks? We are about to inaugurate a new exhibition of artworks at the launch of the new Waldron Health Centre, in Lewisham, London (Summer-Autumn 2008). The films are also being shown in London-wide festivals such as People’s Day (Lewisham, July 2008) and ELEFEST (Elephant & Castle, September 2008), as well as being disseminated widely on the Internet (e.g., ITV Local London). The general response to the art exhibition and the project as a whole has been extremely positive. The simple yet innovative methodology of engaging with a group of individuals (particularly young people) who could be at risk of inherited cardiac diseases and asking them to produce artworks that relate their personal experiences of learning about the conditions, the diagnosis, risk factors and symptoms has proven to be remarkably effective. The project’s approach and development was explored through an article published by myself and Sara Nelson, Associate Director SEL Cardiac Network in the British Journal of Cardiac Nursing (BJCN) in September 2007.1 In BJCN’s following issue, a letter to the editor was published, written by a local practice nurse who attended the gallery exhibition. In the letter she explained how impressed she was with the standard of the “hardhitting” artwork on display, and congratulated the project for having “provided an example of an innovative awareness campaign.”² It brought a heightened awareness, about not only sudden cardiac death but also of healthy living in general, amongst those involved in the project, including their family and friends. Similar positive feedback has been received from those reached through the project via the exhibition, the website or the interactive CD-ROM. A further example of the Project’s success was receiving three awards during the Cardiac Nursing Awards 2008 (organized by the BJCN in association with the British Association for Nursing in Cardiovascular Care [BANCC]), in all of the categories it had been shortlisted: Excellence or innovation in arrhythmia care (Winner), Excellence in Primary or Secondary Prevention (Second Prize), Innovation through Service Development (Joint Third Prize). How often will these artworks be renewed or updated on the website? Is this an ongoing project? Apart from further dissemination initiatives (e.g., exhibitions and film screenings), which will help keep the message alive, the project is not intended to be updated. However, due to its success, we are considering using its methodology to produce other projects with a similar approach. One area that has been considered to potentially benefit from this approach was primary prevention of cardiovascular disease. One thing that was especially interesting to me was the interactive video game on the website. How did the idea for this come about? Who created the artwork and dialogue? I scripted the game and put it together, working with a very talented young flash developer (https://www.clarissamosse.com/) and a local film production company (https://www.toasterproductions.co.uk/). The idea came about in the initial phase of the project proposal development, after consultation with a group of young media students. Later on in the project, the youngsters who worked with me in the film group had some input on the visual aesthetics of the game; the dialogue was loosely based on one of the engagement sessions we promoted at the College. Do you work closely with medical professionals for the website’s design and content? Is your website recommended to new patients by their doctors or GPs? The medical information on the website and CD-ROM was produced in collaboration with the UK-based charity Cardiac Risk in the Young (https://www.c-r-y.org.uk/), which has championed the cause of raising awareness of sudden cardiac death in the young since 1995. Dr. Sanjay Sharma, Consultant Cardiologist at Kings College Hospital Foundation Trust and University Hospital Lewisham, acted as Clinical Lead for the project; Dr. Conrad de Sousa, General Practitioner and Assistant Clinical Director at the Network, provided the clinical input from the primary care perspective. We also had endorsement from the Cardiac Network Arrhythmias Worsktream, which is composed of specialist nurses, clinicians and managers involved in arrhythmia care. We do hope that the website is being recommended and used as a source of information for people who would like to find out more about who might be affected by sudden cardiac death at a young age. When we presented the project at a meeting with the Department of Health’s Arrhythmias Lead, the possibility of developing a project through funding from the Department of Health was discussed, with the aim to evaluate the potential impact of the Silent at Heart Project amongst primary care professionals on local referral patterns and early detection of people at risk. Also, the SELCSN is currently undergoing a Baseline Assessment project of Arrhythmia Services within the southeast London sector. The reach and uptake of the Silent at Heart Project is something that we hope will get evaluated through the assessment. What do you think is the general perception about sudden cardiac arrest in England? Is it commonly misunderstood? Unfortunately it seems that only after the tragedy has stricken that this issue gets any mention in the news or in the bus queues. I believe it is less about misunderstanding and more about the fact that, understandably, people don’t seem to be able to associate (and assimilate) youth and death so readily. There is this general assumption — that youth is the epitome of health and that they are exempt from serious health threats such as inherited cardiac disorders. There is a significant gap of information on the patients’ side (e.g., advice and support in terms of a comprehensive explanation of diagnosis, the diagnostic tests, and treatment options available), but also on the side of primary health professionals. None of the primary care professionals who have cared for me during the 10 years I’ve lived in England expressed any concern regarding my family history of sudden cardiac death at a young age. It took my own initiative to actually get tested. The Silent at Heart Project sought to address this knowledge gap, to provide information in a variety of forms that would stimulate the interest of young people and their families and raise their awareness so perhaps they too will also prompt their doctors if they fear they could be at risk. The Project has achieved this by using art to promote the knowledge that SCD can be identified, prevented and treated. How can someone get involved with the Silent at Heart Project? In addition, are there any plans to exhibit these works in the United States? The best way to get involved would be to spread our message as far and wide as possible! We have not yet been invited to bring the project stateside, although we would be delighted with the opportunity if it so arises. However, a few months ago we were approached by a cardiac educational specialist at the Mayo Medical Center in Rochester who was very appreciative and seemed keen in replicating the Silent at Heart methodology in a similar approach at his local high schools. Any further queries can be directed to info@silentatheart.org. For more information, please visit: www.silentatheart.org www.selcardiacnetwork.nhs.uk