Cardiac genetics nurses

Genetic cardiac specialist nurses facilitate the care of patients with inherited heart conditions.

They do this through the provision of support and information for patients and their families, by developing pathways into specialist services and acting as an interface between different professional teams.

Tootie is a genetic cardiac specialist nurse based in London. She has been a nurse for 17 years and BHF nurse for nearly four years.

Tootie holds three clinics each week.  Some will be lucky and have their results confirmed as negative. Others will learn they have inherited a heart condition or, in the severest of cases, are at risk of sudden death.

“It gets very emotional. I don’t think I’ve ever had a clinic where nobody has cried.  I let patients express their stress and anxiety, and be there for them. We and the BHF can give them resources to cope.

“The funds from the BHF mean that I am able to help families in a very difficult time of their lives.  Instead of taking on negative coping habits, I help them to channel their emotions to create positive health changes.

"These can prevent death and illness and allow people to regain their rightful place in the family and society.  It is satisfying to see someone who has been emotionally bogged down thriving again.”

"I saw my genetic cardiac nurse for the first time and my experience was good. I wish a lot more people were like Tootie. She was very kind to me and my family.  I only wish I could see a nurse like her more often.  I want to be seen as a person and not just a number."