In conversation with…four nurses working in inherited cardiac conditions
Meet Colin, Soraya, Maria and Chris. They are all Clinical Nurse Specialists working in inherited cardiac conditions.
They have an essential role in caring not only for patients diagnosed with an inherited cardiac condition (ICC), but their families as well. As experts in cardiac genomics, they meet with patients and families to talk through their options, as well as taking the time to answer questions and provide genetic counselling.
An inherited cardiac condition occurs when a gene change occurs in your DNA resulting in a heart condition. You may never develop any signs or symptoms of the condition itself, but you could still pass that gene change onto your child who may then be affected. This uncertainty can be very challenging, but the nurses are trained to give support and advice.
If you are diagnosed with an ICC, your close family would also be offered genetic testing. That means that Colin, Soraya, Maria and Chris get to know, and support, the whole family who will remain under their care for their entire lives.
“One of my favourite aspects of the job is really getting to know our patients. We see them at different stages in their lives, and we really do get to know them quite well.”
As is common with a lot of nurses who specialise in genomics, none of them had much experience of genomics prior to their ICC role, despite working in cardiology for many years. All of them had a steep learning curve when they joined the team.
Colin had been working on the helpline at the British Heart Foundation when they received funding to create new genomic specialist nursing roles for their genetic helpline. This funding allowed Colin to undertake modules in genomics and develop his knowledge of ICCs. After coming back into his clinical work, he transitioned into the ICC Clinical Nurse Specialist role.
For Soraya, Maria and Chris they were interested in genomics after working in cardiology and decided to learn more about the link between genetics and cardiac conditions. They utilised a range of resources to upskill themselves, from observing ICC clinics, reading research papers, and in Soraya’s case, even undertaking a postgraduate diploma (PGDip) in Genomic Medicine.
“Our advice to anyone interested in specialising in genomics is to be curious. Ask questions, seek out training and spend time with relevant clinicians. It’s also important to have patience. It can take time to build up experience and feel confident in talking to patients about genomics.”
All of them found the CLIC South London Network helpful. It’s a series of virtual meetings covering different aspects of ICCs which helped them to learn from each other, share experiences and ask questions to nurses working in the same role.
Although Colin, Soraya, Maria and Chris are all specialists now, they explained how all nurses have an essential role in genomics.
“As nurses, we naturally build a rapport with our patients, and they share their stories with us. By understanding the basics of genomics and the importance of family history, we can spot when something doesn’t sound right. With inherited cardiac conditions especially, it is important to receive timely testing and care, so if we can pick up the signs it can make all the difference.”
When asked how fellow nurses could also learn about genomics, they had one piece of advice.
