Heart patients launch new pacemaker guide for teenagers

Authors Hannah and Katie with a copy of Wired Up

Evelina London patients have created a booklet to help other young people who are living with a pacemaker.

Friends Hannah Phillips, 22, and Katie Miller, 20, were born with congenital heart conditions. They now both live with an implanted device called a pacemaker to control their abnormal heart rhythms.

After their experiences, Hannah and Katie wanted to help other young people who need a pacemaker by providing easy to understand and relatable information for people aged 13-25.

Hannah, who is studying early years education at Greenwich University, said: “Wired Up was developed from our shared personal experience of being teenage patients. At the time we wanted information about living with a pacemaker that we could relate to, so we decided to create a guide that would resonate with people our age. As former Evelina London patients it was really great to get the support of the hospital with the booklet. We are really thankful to everyone from Evelina London who got involved, and helped to get Wired Up published.”

Katie, a cardiac physiology student at Swansea University, added: “With Wired Up, the aim is to help other young people living with similar heart conditions. Hopefully the booklet will provide relatable information for teenagers on a more personal level without boring medical jargon and a clinical feel. As well as answering questions that young people may have, I hope it acts as a guide to support them on their journey.”

Wired Up was funded by Evelina London’s heart service (cardiology) and supported by the engagement team who work with young people and families to make sure that their opinions are used to inform improvements to care.

Professor Eric Rosenthal, consultant paediatric and adult congenital cardiologist at Evelina London, said: “Katie and Hannah should both feel extremely proud of what they have achieved by creating Wired Up. We know how crucial it is for young people to have accessible information about care, so we are very pleased that we have been able to support the publication of this important booklet. It will be a great resource for young patients living with pacemakers for a range of heart conditions.”

Our heart services diagnose and treat numerous children’s heart conditions and care for around 6,000 patients a year. From now on, Wired Up will be offered to heart patients at Evelina London.

You can read online and download Wired Up.

More about Hannah and Katie

Hannah was born with a congenital heart condition called Ebstein’s anomaly (a condition where the valve which directs blood through the right side of the heart does not work properly). As a result of her heart condition Hannah developed complications, including tachycardia (a fast heart beat) and arrhythmia (an irregular heart rhythm). Hannah has undergone surgery eight times, and her pacemaker was fitted at Evelina London when she was 16.

Katie was born with a congenital complete heart block (an abnormal heart rhythm caused by a delay to the electrical impulses that tell your heart to beat), patent ductus arteriosus (where blood mistakenly flows between two of the major arteries connected to the heart), and a problem with one of her heart valves.  Katie first had a pacemaker implanted when she was four years old, which was replaced when she was 16. She had a new pacemaker fitted at Evelina London when she was 20.