Supporting young people with inherited cardiac conditions

Patients at the event

The inherited cardiac conditions (ICC) nurse specialist team based at Royal Brompton Hospital (part of Guy’s and St Thomas’ NHS Foundation Trust) recently teamed up with the Brompton Fountain charity to host a day of talks and workshops for young people aged 13-22 with inherited cardiac conditions to help them transition to adult healthcare services.

Young people heard about the range of socialising opportunities for young people through rb&hArts; learned about the impact that lifestyle factors including drugs, alcohol, exercise and diet have on heart conditions; and heard advice from people with ICCs who had already transitioned to the adult services about their top tips for making the move as smoothly as possible.

Krishan Patel, a 16-year-old patient at Royal Brompton Hospital from Harrow said: “We’ve learned a lot about the structure and function of the heart, and how it relates to different diseases some of us have, which I found really interesting.

“I have an enlarged heart which prevents me doing some sports and can leave me breathless. At the start, when I was first diagnosed, I found it quite hard to manage my condition, but the nurses and my medical team have helped me so much and now I don’t find it difficult at all. I am so grateful to them.”

The day also served as an opportunity for the young people to meet others living with similar cardiac conditions and learn from one another about the challenges of handling a cardiac condition while navigating school, college, university and work.

Emma Jennings, a 20-year-old biomedical sciences student from Reading and patient at Royal Brompton Hospital said: “I have dilated cardiomyopathy, a heart disease where the muscle of my heart is thinner than normal and I have a larger and weaker left ventricle in my heart. Day-to-day it means that I have to take medication and be slightly more wary when doing strenuous exercise and when drinking alcohol. It also means that I need to remember to give myself time to recover from minor illnesses like coughs and colds which can exacerbate my condition.

“It has been great because I’ve met a load of other young people like me with the same heart condition. Before today I didn’t know anyone beyond my immediate family with this condition, and it had been quite isolating. I’ve really enjoyed sharing experiences and feeling like I’m not alone.”

The ICC nurse specialist team looks after patients and their families who suffer, are at risk, or are suspected of having an inherited cardiac condition. These conditions include cardiomyopathies (diseases of the heart muscle), inherited arrhythmias (abnormalities of the heart’s rhythm), and aortopathies (diseases affecting the main vessel taking blood away from the heart).

The team is comprised of both adult and paediatric trained nurse specialists, who provide support, advice and education from childhood through to adulthood. The specialist nurses are key to ensuring the multidisciplinary clinical team works efficiently and with a family-centred focus.

Lucy Green, a clinical nurse specialist in the ICC team, said: “This day gives the young people we support an opportunity to ask questions and not focus on the various restrictions their conditions can mean, but on how to live a full life. Most importantly, it gives them the chance to form peer networks with other young people like them who understand what it’s like growing up with cardiac conditions so they don’t feel isolated.

“We worked closely with the young people in our service to co-design this transition event. A lot of our patients tell us that moving from the paediatric to the adult services can be quite challenging and overwhelming, so we wanted to equip them with all of the skills and knowledge they need to lead happy, healthy and fulfilling lives into adulthood.”

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