Young patients with inherited cardiac conditions (ICC) face greater challenges than many other teenagers during adolescence. Among them are moving from children’s to adult services and taking greater responsibility for their own health and wellbeing.
Recognising this, our specialist ICC nurses help young people to plan and prepare for the move to adult services, and for the first time this year (2018), held an information day offering them support and breakout sessions for family members or guardians.
The goal of event held at Chelsea Football Club with the support of The Brompton Fountain charity was to educate and inform young people aged between 14 and 19 years old about how lifestyle choices can affect heart health.
Lucy Green, paediatric ICC nurse specialist, explained: “The idea came out of a research project I did. Patients with inherited heart conditions – such as cardiomyopathy and arrhythmias – said they would really appreciate a day that wasn’t too formal, where they would get to meet other people facing similar issues. We thought we’d make it feel less hospital-like by getting out of the clinic and into a more fun setting.”
After a talk on the ‘normal heart’ by paediatric clinical educator Dan Fossey, which gave everyone an insight into the workings of the cardiovascular system, Rachael Duthie from the charity Hope UK, which provides drug and alcohol education, explained the effects of legal and illegal substances, and led a group discussion on why people use alcohol and drugs.
Rachael said: “There is a lot of pressure from peer groups and wider society to drink, or even try drugs. We try and give young people the right information to equip and empower them to make the right decision.”
Sessions included exercise and lifestyle advice, and an opportunity for young people attending to separate from their parents and carers to quiz experts on topics such as mental and sexual health.
Anita Kolawole, 17, was among those who attended. She said: “It’s been a fantastic day. I have a dilated cardiomyopathy (a condition where the heart is enlarged and function is impaired) and it’s not always easy as my friends don’t have to think about their health in the same way as I do. Meeting people with similar issues is great.”
There is a lot of pressure from peer groups and wider society to drink, or even try drugs. We try and give young people the right information to equip and empower them to make the right decision.